Asperger's Alive

The changing landscape of autism and neurodiversity

The Pain of Being Linked by Asperger Dx to a Mass Shooter

When myths and misunderstandings are perpetuated, nonviolent people suffer.

Santa grieves outside Sandy Hook school

Santa grieves outside Sandy Hook school

We interrupt these broadcasts about DSM-5 to bring you emergency commentaries relating to the agony and devastation at Sandy Hook Elementary School in Newtown, Connecticut.

In the wake of the harrowing deaths of twenty young children and seven adults, it is difficult to focus on anything else. But the autism community has had to. Early reports included speculation that the shooter had Asperger syndrome and an unknown psychiatric condition, raising fears of retaliation against those who are neurologically or psychiatrically different.

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So it’s deeply heartening that many members of the autism community have posted eloquent responses, some of which are climbing high in the internet search charts, and major news outlets have begun to emphasize that Asperger’s and autism are not connected to planned violence. I can't help sort-of-hoping we retire any neurological or mental health diagnostic labels associated with this guy, for the sake of the millions of nonviolent people who also bear them. (Maybe that's an argument for being pleased with DSM-5 after all.)

The posts largely share an essential theme: please judge the shooter, not the autism or mental illness, if he even had autism or a mental illness. But they approach it in different ways and with varying emphasis. This post is a library of links to some of those pieces. Most were written by people with Asperger syndrome or another form of autism. Please read for your comfort (if you're autistic or mentally ill) and education (if you're not).

Autism, Empathy and Violence: One of these things doesn’t belong here

Emily Willingham, Forbes writer and science editor of The Thinking Person’s Guide to Autism, clarifies the misunderstanding that autistic people are not empathic, illustrated with sweet vignettes of her 11-year-old son who feels the pain of tree nuts being cracked. “No one knows as of this writing what drove the Connecticut shooter to kill 20 children and 7 adults, point blank, although obvious candidates are rage, hate, a huge grudge against humanity, and some triggering event. But if he turns out to have been someone on the spectrum, I'd like to remind everyone that autism is not an explanatory factor in his actions. And that autistic people like my son are fully, fully capable of empathizing with those who were the target of them.”

Mother with Asperger Syndrome Grieves Sandy Hook Elementary Tragedy

Paula Durbin-Westby was one of the first responders to the scene, in the sense that she was quick to post her commentary, and already her account has been read by thousands. She acknowledges that it is easier to speculate about the mental health and motives of the killer than to focus on the devastation of the victims’ families— but this raises the risks of retaliation against autistic and mentally ill people. “I would like to say that there will be time later to write about the media speculation that the shooter had Asperger syndrome (as well as a personality disorder and OCD) all unverified but being bandied about on any number of news outlets and web sites. There is not; the time is now.”

My Broken Back
At This Raving Mother from Hell? You bet! we have a parent's frightened, furious response to misinformed media mutterings on autism. "Today I live in fear because of a rhetorical interpretation of the 2nd Amendment...I fear my family may end up collateral damage so that gun enthusiasts can continue to stockpile assault weapons. But I mostly live in fear for my autistic child. A victim of abuse by the hands of 'typical' people, my child, who values life above all, is now the target of a media frenzy."

It is painful and frightening to feel associated by virtue of a diagnosis with one who has committed this horrific crime.

From the Asperger’s Association of New England. “Our overwhelming concern is for the families of the victims through their deep, enduring grief and devastation. We hope too that the conversation around Adam Lanza will be thoughtful and considerate of people who have Asperger syndrome or other forms of autism and their families. When myths and misunderstandings are perpetuated, nonviolent people with the same condition suffer. It is painful and frightening to feel associated by virtue of a diagnosis with someone who has committed such a horrific crime.”

One Truth About Autism and the Sandy Hook Elementary Tragedy

ProfMomEsq takes on the talking heads in the media who claim expertise on autism but talk as if they learnt it all from a 1960s diagnostic manual five minutes before the broadcast. And then she gives us a contrast that says everything. “I am furiously angry, because what I hear these ‘experts’ saying over and over again is that my daughter — my beautiful, sweet, loving, funny little girl — has more in common with a cold-hearted killer than the 20 beautiful souls who perished and the hundreds more he scarred.” Damn straight.

Plea From the Scariest Kid on the Block

When we stigmatize other people, we shape their personal narratives. We define them to themselves in negative ways (sometimes even when our intentions are good), and in doing so, steer them towards their worst outcome.* In this response to the Newtown tragedy, autistic self-advocate Kassiane Sibley, who blogs at Radical Neurodivergence Speaking, describes the similar power of messages that were anything but well-intentioned: how being an abused and bullied child defined her, in the eyes of her community and herself, as unsafe: "People were telling their nice, 'normal' children to stay away from the bullied children....Warning everyone that we were dangerous, the scariest thing on the block again .... We are dangerous and unpredictable because we didn't have the skills and characteristics to not be at the bottom of the pecking order of middle school....We are damaged, terrifying, violent, dangerous, irredeemable. We are the middle school monsters of your nightmares. Again, I was the middle school monsters of my own nightmares, too. Literal nightmares, I'm talking. Still everything around me was telling me that because of things outside my control I was destined to go out in a blaze of violence and take as many people as I could with me. That was the career path being offered to me. Isolate me. Make me alone. Fear me. Abuse me some more. Make me more dangerous."
[* See Timothy Wilson's 2011 book, Redirect.]

They’re Saying the Shooter had Asperger’s

Troubled by uninformed, negative mutterings about autism? Quick, head for The Daily Kos, where Troubadour muses on the pacificity of his (her?) autistic mind: knowing right from wrong, and the tendency to shut down under stress. The most interesting thing here for me was the readers’ comments. It’s a long thread, still growing, but wherever I’ve dipped in I’ve found the commentators to be generally interested in autism, understanding and disinclined to judge. A rare safe haven.

[Removed:
I initially included a piece purporting to be an account of raising a child who has profound behavioral challenges and cannot be effectively treated. Since this essay appeared online yesterday it has received a whole lot of attention and applause. But in online discussions in autism and mental health circles, red flags are being raised. Many commentators are concerned about the boy's loss of privacy in the context of this extremely negative portrayal, and the potentially damaging implications for him and other children who have neurospychological differences. The piece has been criticized by Kerima Cevik and an unidentified blogger at The Girl Who Was Thursday. The academic and journalist Sarah Kendzior has published an alleged expose of the writer. And now Lindsay Bayerstein at In These Times has adminished the critics. I want parents to speak out, I want their message to be protective of their children as well as honest about their families' challenges, and I want us to be willing to heard their voices without assuming such parents have caused those challenges. But given the doubts and alarm about the veracity and message of the original piece, I've removed it.]

If you really care about mental health...

Twitchy Woman, blogging at Weird Law, describes herself as a an attorney with an interest in disability and civil rights law. She suggests three mental health or autism advocacy organizations that focus on helping people with disabilities and opposing stigma and discrimination, which deserve our support (they include the Autistic Self Advocacy Network, quoted below). "It especially bothers me when people call for 'more services for mental health.' ... These calls for services sound so benevolent that it’s hard to call people out on it. But one of the main barriers to accessing services is stigma. Another barrier to services is the fact that many programs were created in the wake of violent tragedies like this one, which means that they’re (1) coercive, and (2) only available to people who are seen as likely to become violent."  My own addition to the list: The Asperger's Association of New England is another organization that provides services and support, advocates for expanded state services, and works hard to reduce the stigma and discrimination of disability and mental illness.

I Won't Go Back

Amy Gravino, blogging at Amy's Tiny Corner of Existence, says we must not allow this tragedy to undo the progress that autism advocates have made. "I won't go back to when words like autism and Asperger's Syndrome had no recognition, no meaning...no place in the world. Autism and Asperger's Syndrome do have meanings now...and that is what worries me. All too easily, a story on the news translates into frightened parents, children who believe their AS peers are killers, and a stigma that can never be fully shaken."

Evil. Insane. Mentally Ill. Autistic.

The blog Living My Social Work is written by an autistic mother in Toronto. Her two children are autistic, and one also has mental health problems. She urges the autism community not to distance itself from mental illness. “This is a shortsighted move, and a dangerous one. Claiming that the shooter (whose name I will not share) was mentally ill and that autism had nothing to do with his actions indicates agreement with the idea that mental illness was the cause. Given that over 2/3 of autistic individuals will also experience a significant mental illness over the course of a lifetime, this lack of solidarity does none of us any favours. “

We are not immune from becoming people capable of making terrible, horrible choices. No one is.

GRASP, the Global & Regional Asperger Syndrome Partnership, impressed me for its quick acknowledgment of the painful possibility that the shooter had AS. “Having Asperger’s or the autism spectrum in your life—as an individual, a parent...etc.—does not carry any bearing with whether or not you will become (for lack of a better term) ‘a good person’ in this life. While the majority of statistics prove that we are infinitely more prone to be the victims of violence than the perpetrators of violence, we are not immune from becoming people capable of making terrible, horrible choices. No one is.”

When Children Die, it’s Time to Grieve and Reflect, Not to Scapegoat

Rachel Cohen-Rottenberg, blogging at Disability and Representation, explores the wide chasm between the spontaneous meltdown behavior sometimes seen in stressed autistic people and the ruthless, premeditated violence that has devastated Newtown. “Autistic people have meltdowns because their sensory systems get overloaded and it hurts more than anyone who has never experienced it could understand.... People in the midst of a meltdown do not take the time and the forethought to arm themselves with a bullet-proof vest and several weapons, make their way to an elementary school, and consciously target two particular classrooms of children and the school office. In fact, most people in the midst of a meltdown just want to withdraw and get away from people and the stressors that cause overload.”

Stepping into the Void

At Diary of a Mom, Jess Wilson recalls Joe Scarborough’s cavalier autism slur that followed the Aurora shooting, and, movingly, the example of Boo Radley in To Kill a Mockingbird. “Fear becomes truth. Misconceptions and misperceptions and outright lies become the popular zeitgeist. Autistic people who have struggled for so long to be understood — who have finally, painstakingly made strides in changing age-old misconceptions about who they are — who have begun to be seen by society in all of the glory of their complete human dimension are suddenly and terrifyingly thrown back at warp speed to the days of Boo Radley — to a time when it’s okay to channel society’s fear into that which is different – to point fingers at that difference and to connect it to evil — to blame it for incomprehensibly monstrous acts and in so doing to make them the target of all of our sadness and anger and desperate, aching fear that it could happen again.”

You Can Call Me Angry, Just Don’t Call Him Autistic

Kim Stagliano’s piece at the Huffington Post doesn’t entirely work for me, since she asks how we dare mention autism at all in the context of the shootings— which is surely both futile (hey, it’s out there) and misguided. What if the shooter was autistic? Denial costs us credibility. Nevertheless, her defence of her three autistic daughters and the autism community is helping to get the message out: “The chasm between bad behavior and mass murder is wider than the space between Madonna's central incisors.” (Pause while I check out Madonna's teeth.)

Nameless Things Dismantle

Lydia Brown at Austistic Hoya took this in a very different direction. Her poem captures grief on sensory overload.

“Thunder rumbling behind my eyes, waterfall roaring behind my ears,
cavernous cacophony all in between the crevices—
I am smothered by the flitting, fleeting thoughts,
impressed by the crowded solitude inside here,
and I want to taste the silence,
but it only tastes like blood—”

Her second update, Can I Hide Somewhere Till It's All Over?, answers the search engine questions of the day (for example, "are autistic people more likely to kill") (um, no).

When You Tie Shootings to Mental Illness

Kate Donovan, guest blogger at Ashley F. Miller’s site, makes an argument that fascinates me: "¬I’m asking you—begging you, really— to not decide that Lanza had a mental illness.” This was a huge talking point in autism self-advocacy forums following the Aurora shootings, where some participants said that to assume mental illness in the shooter was an act of ableism and “psychobigotry”. It’s coming from a place of tremendous concern and compassion for those with mental health conditions, and the misunderstanding, judgment, exclusion and abuse that they commonly endure. I get that. But how can we conceive of a mass shooting as a mentally healthy act? If that’s our argument, what does mental health even mean? How exactly we diagnose and label the killer’s mindset is another issue — but if we’re not going to even label it unhealthy, how credible can we be? My message is: mental illness in the vast majority of cases is nonviolent. Happy to hear opposing arguments.

Let us come together to mourn and defend

The Autistic Self-Advocacy Network, responding quickly, led the calls for responsible dialogue. “In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”

In Response to Connecticut

An autistic adult blogging at Yes, That Too, tackles the criticism that this is not the time to get political (editor's note: as if innocent people being shot is not inherently political) and to defend herself from what is being said about autism: “People keep saying that now is not the time to talk about this, but the instant the accusation has been made, the time to talk is now. The ‘no politics in a tragedy’ rule is broken by the attack on my neurology, and I am allowed to defend myself, no matter how political, long-winded, or anything else you could call my defense. I am not the one derailing the conversation about a tragedy. I am the one answering an attack on the very core of who I am, and I am permitted that answer everywhere and everywhen such an attack happens.”

And some more

Statement from Autism Women's Network

Statement from the Autism Society of America

That's just not what autism is: a conversation with an autistic child

Words from Sharon at Mama's Turn Now

Fewer words from Autism Speaks

Shain at TOTKO says "I'm an autistic person, not a killer"

Liz Ditz at I Speak of Dreams provides another round-up of contributions, which might include some that aren't here.

 

 

The Santa cartoon is by Captain Cartoon.

 

 

 

 

 

 

Lucy Berrington is a Massachusetts writer and the parent of a teen with Asperger syndrome. She serves on the Board of Directors of the Asperger's Association of New England.

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