Thursday, December 20, 2012

Aspergers and Violence - Let’s Stop the Rush To Judgment

Asperger’s, Autism, and Violence or Mass Murder
Let’s Stop the Rush To Judgment

Whenever something horrible happens the public and the media look for answers . . . factoids to explain what may be truly inexplicable.   Whatever information can be discovered is tossed out into public view in the hope that somehow a bunch of discrete facts and data points will somehow provide the answers everyone is seeking.

This happens whether the event is a catastrophic fire, a plane crash, or a mass killing.  Thanks to the Internet, people all over the world speculate about what happened and why, often in the absence of any firsthand information.  The result: a rush to judgment, and all too often - innocent people harmed.

Sometimes these early speculations are prescient.  When reporters observed an aviation mishap and said, “the same thing happened on another flight a few years ago,” that report led to the discovery of a flaw in an aircraft’s design, and the potential saving of many lives when a design defect was corrected.

Unfortunately, on other occasions, early speculation proves unfounded, wrong, or irrelevant.  When that happens, innocent people are often harmed by the rush to judgment.  I’m very concerned that is occurring right now, as the public digests news reports about the Sandy Hook school murders.

Reporters are saying the killer had Asperger’s Syndrome, a form of autism.  Every time a news story does that – by tying “killer” and “Asperger’s” in the same sentence – they are at some level implying that there is a connection between autism and mass murder.   

There’s not.

Statisticians have a phrase for this situation:  Correlation does not imply causation.

Let me explain that by way of an example.  Three banks are robbed, in three different cities.  Each bank had security cameras trained on the entrances.  In each case, a review of the tapes showed a white Toyota Camry turning into the parking lot, moments before the robbery.

Was that a clue?  Was the same car used to rob all three banks?  No.  It was a random, irrelevant coincidence.   In fact, white Camrys are one of the most common cars in the country and we might observe them at the scene of most anything, without any causative connection at all.

How about this factoid:  Most school shooters are Caucasian males.  You might find that statement a little more shocking than the previous one.  But it’s true.  Does that mean every white male Caucasian who enters a school is a potential mass murderer?  Of course not.

Suggesting a mass murderer had Asperger’s is much the same – it may be true, but stating the fact does nothing to explain the crime, nor does it help prevent other crimes in the future.   What it does do – and this is important – is paint a whole swath of population – Asperger people – with a brush that says “potential mass murderer.”

That, folks, is a problem, because the average person does not know enough about Asperger’s to know it does not turn people into mass murderers.   They file that factoid away until the next time they see someone with Asperger’s.  Then, instead of giving him a fair shake, they treat him as a potential killer.  Everyone loses.  As an adult with Asperger’s, who’s seen enough discrimination already, I’m not too happy about that.

What can we do?  There’s no way to “undo” a news story.

Going forward, perhaps the best thing we can do is explore the question:  Can Asperger’s turn a person into a mass murderer?  The simple answer is no.  Here are the reasons why:

Asperger’s is an autism spectrum disorder.  People with Asperger’s typically have difficulty reading the unspoken cues of other people.  You might say we are oblivious to the language of emotion.

Yet we are emotional people.  Many studies have shown folks with autism have very powerful emotions; the problem is, we often can’t express those feelings in ways others can recognize.  Sometimes our responses seem inappropriate (we may smile when you expect us to look sad.)  Other times, an event that triggers a strong emotional response in one person has no visible effect on a person with autism.

Lay people often take those signals to mean we Asperger people don’t have feelings, or we don’t care about them, or that we lack empathy.  Nothing could be farther from the truth.

As the definition of autism and Asperger’s says:  This is a communication disorder. It’s not a “lack of feeling” disorder.   In fact, most clinicians who work with people on the autism spectrum will tell you autistic people tend to care deeply for people in their lives, and have a sweetness; a childlike gentleness – something totally at odds with what you’d expect in a cold blooded killer.

There is nothing in the definition of Asperger’s or autism that would make a person think we are a violent group.  That’s reinforced by criminal justice studies telling us that people with autism are much less likely to commit violent crimes than the average person.  Indeed, those studies show autistic people are far more likely to be victims of violence than perpetrators.

If you’re looking for a group of people to fear, we’re not it.

So where does that leave us, in our quest to understand these most recent killings?

Adam Lanza may well have had Asperger’s.  But that did not make him a killer.  Some other factor was at work.  Just as getting a cold doesn’t protect you from catching measles, having an Asperger diagnosis does not mean you don’t have a host of other issues as well.  One can suffer from homicidal rages, and also be diagnosed with Asperger’s.  Those conditions are not mutually exclusive.

It's also worth noting the studies that have shown how *anyone* may become violent, given the "right" (wrong) set of circumstances.  It's true that people on the autism spectrum have less propensity for violence than the average person, but that does not mean they can't ever become violent.  If violence is a disease, no human is immune.

And that’s not the only possibility.  There are plenty of other frightening and disagreeable combinations in the world of psychiatry.

In fact, a child who grows up with a disability that leads to bullying (like Asperger’s) may develop violent feelings toward his tormenters.  Most times, those feelings stay inside, to the detriment of the victim.  Sometimes, though, the victims strike back.  When that happens I’d say it was the bullying, and not the disability, which turned that person violent.

One day we may have a hard medical test for autism – including Asperger’s.  Until then, it’s diagnosed by observation – a process that is unfortunately more prone to error than we would like.  The Asperger diagnosis attributed to Adam might even have been a mistake; sociopathy can masquerade as mild autism or Asperger’s.

It’s easy to see how the two conditions might be confused.  After all, one is characterized by a weak ability to show feelings, while the other is founded on an absence of feeling within, and a lack of innate moral foundation.  Those two conditions may look very similar, but the outcomes are not. One leads to anxiety, depression, and social failure.  The other may lead to evil, and a much darker place.

I’m not Adam’s therapist, and I have no knowledge of his case, but I would not be surprised if there was quite a bit more to his story.  Much of it may never be known.

I wish I had some simple solutions to propose, so that we might prevent these horrific crimes in the future.  Unfortunately, I don’t.   A reading of history shows us that most rampage killers turned deadly with little or no warning.  Many had no prior history of serious violence and some had no criminal records at all.

Yet there are things we can do.  We can take stronger steps to address bullying, and we can offer counsel to those adults in greatest need.  Many studies have shown that violence is a last resort for people at the end of their rope.  We have the power to give those people a lifeline, so they won’t turn to the gun.

To me, this crime and others like it show the great need for mental health reform.   We have no facility in this country for “mental health checkups,” and we’ve pitifully few lifelines to help those on that slippery slope to suicide or murder, whatever the cause.  If I were to express a Christmas wish here, it would be that our politicians see that failing, and act.

Best wishes for the holiday season,
John Elder Robison

And remember - RAISING CUBBY is coming - March 12, 2013

Wednesday, December 5, 2012

Autism - The Invisible Cord: A Siblings Diary

Last week, I wrote an essay challenging Time Magazine’s choice of a title for its story on siblings of kids with autism.  I believed calling the siblings “autism’s invisible victims” was inappropriate and offensive.

The disgust I felt over the title choice overshadowed the article itself, which made many good points if one could get past the demonization and victimization.

The author of the story – a psychologist named Barbara Cain – had previously written a book called Autism – The Invisible Cord: A Sibling’sDiary.  I decided to download her book and see how she described life as an autism sibling.  I wondered what I would find.

I read the book in an hour, and all I can say is, what a delight!  It’s a sweet and gentle account of Jenny and her life with Ezra, her autistic brother.  There’s not a trace of victimization in the book and indeed I recommend it highly to anyone who has a sibling living with autism in their life.

Barbara’s story – told in the form of short diary entries – really shows what is feels like to grow up with a brother who’s different – the joy, the hurt, the desire to protect him and the hope he will grow up and make a life on his own.

Reading her words, I thought of my own childhood, and that of my son, who also has autism.   If we’d had sisters, would they have been like the Jen of the book?  I hope so.

Kudos to Barbara for a wonderful story that any sibling or family could treasure.

You can order her book here and find her @BarbaraSCain on Twitter

Sunday, December 2, 2012

Are Siblings Really "Invisible Victims of Autism?"

What is a victim?

The word may be defined as: a living thing that is adversely affected by the action of something else.  What does that make the “something else?”  The victimizer. 

Here are some appropriate examples that will be familiar to all of you:
Bob was the victim of a sophisticated swindle
The victim, thirty-year-old Jessica Danes, was shot twice at close range
Don’t become another burglary victim.  Buy an Acme Alarm today!

In every case the victimizer is someone undesirable.  A swindler, a murderer, or a burglar.  Indeed, the word victimizer has no positive connotation in our society.  It is not a label anyone any reasonable person would want to wear.

With that preamble, here comes a headline from Time

I was shocked to see such a phrase from a supposedly progressive mainstream publication. 

Left unsaid – but obvious – is the identity of the victimizer.  It is us!  We autistic people are victimizing our poor siblings.  With everything else we’ve done wrong growing up, victimization of our brothers and sisters is added to our burden, thanks to this article.  At least, that’s how author Barbara Cain seems to see it.

It troubles me greatly when mental health professionals make pronouncements like this, as if we autistic people are oblivious to what they say or do.  Siblings are not “victims of autism.”  They are siblings of autistic people.  Period.  Some things about family life are easy.  Other aspects are hard.   Autism is one of those things. 

Does autism make life tough for us and our siblings?  Sure it does, sometimes.  Does autism show us a fun and funny side on other occasions?  Sure, it does that too.  Some of us revel in our eccentricity while others would give anything to be rid of this autism thing.  All the while we have one thing in common – we are not victims or victimizers.  We are just autistic people.   Our siblings aren’t victims either.  They are our brothers and sisters, sharing in life’s joys and struggles.

Autism is a permanent state of being.  It’s how we’ve been as long as we can remember, and how we will be – for the foreseeable future.  We will change, grow and develop, but we will always be autistic.    Victimhood – in comparison – is a temporary state.  We may become victims at any time – of a robbery, a building collapse, or an Internet scammer.  But those things will pass.  They do not define who we are in the way an essential difference like autism does.

Some may defend this article by saying autism affects everyone in a family negatively, like poverty or a hurricane might.  That’s a flawed defense, though, because hurricanes or poverty are faceless victimizers.  Anyone can blame them, but its meaningless because they are no one.  We autistics, on the other hand, are people.  Real people.  Your brothers and sisters.  With that fact in mind I repeat – we are not victimizers.

Many in our community have argued against the demonization of autism and autistic people.  It’s distressing to see the same tired phrases repeated in a national forum like Time.  I’m sure the writer had good intentions, but the implementation leaves much to be desired. 

Does that mean we should ignore the pain of autism siblings?  Of course not.  Those of you who follow my writing and my service on the IACC and autism science boards know that I have a strong commitment to develop ways to relieve suffering and disability caused by autism.   It’s natural to think these therapies, tools, or treatments would be aimed at the autistic people themselves but in fact we must help everyone in the “autism circle.”  That certainly includes the parents, and yes, the siblings. 

We must also change our world to be more accepting and accommodating of autistic people.  That will reduce suffering for all of us.

Meanwhile, let’s keep the word “victim” out of the autism conversation.

Best wishes to all of you this holiday season.
John Elder Robison