Autism Acceptance Month: Empathy in Action

Dear Fellow Empaths,

April is here with its promise of Spring, but this has also become a time that can cause a great deal of pain for many autistic people and parents of autistic children. Why? Because tomorrow (April 2nd) is Autism Awareness Day, and in many cases, the awareness focus is on alarmist rhetoric about epidemics and despair — and on finding a cure at any cost (and framing autism as a tragedy) instead of focusing on the intrinsic value of autistic human beings.

I’ve been thinking a great deal about autistic people since I worked with a group of autistic youth in 2006, and I find that the ways their lives are framed, the disease model they are branded with, and the constant depictions of them as unempathic and mind-blind has led to an astonishing and literally life-endangering level of dehumanization (last month’s murder of George Hodgins and the truly horrendous media coverage of his death is just one example).

But an equally astonishing (and wonderful) response from within the Autism community is an amazing, tumultuous, and heartening civil rights struggle, where people who have been branded as broken, unempathic, and not fully human are standing up to assert their humanity and claim their human rights. But more than that, I’m seeing autistic youth and adults reaching out to offer mentoring and support for autistic children who are growing up in a world that is neither prepared for them nor accepting of their differences and their needs. This. Is. Awesome.

In support of the civil rights and human rights of my autistic friends,  I’ll be using Twitter, Facebook, and this site to support the autism-positive movement called Autism Acceptance Month.

In honor of Autism Acceptance Month, I’m reprinting and updating my two-part essay, which was written last year for the Rachel Cohen-Rottenberg’s groundbreaking site, Autism and Empathy. If you or anyone you know is autistic, bookmark Rachel’s site now!

Empaths on the Autism Spectrum, part 1

Can I do this job?

In early 2006, I got a job working as an academic liaison for a group of 22 college-aged students on the Autism Spectrum. My job was to help the students with all of their academic needs: scheduling, counseling, learning accommodations, tutoring, social services, transportation … I was hired to create a total support system under and around the students so that they could successfully attend college. Before the job started, however, I had some serious research to do.

I’ve worked with and tutored physically disabled and learning disabled people for most of my life, but I had almost no experience with people who had autism or Asperger’s Syndrome. I knew a little bit (Rainman, sigh), but not enough to be able to truly help. So I got every book on autism and Asperger’s at the public library and every book at the community college library, and I started from the ground up.

After fifteen or twenty books, I understood a great deal about the symptoms, history, approaches, and confusion surrounding diagnoses of autism or Asperger’s, which are quite distinct on paper, but are often diagnosed based on what kind of funding is available for each condition in each state, county, or school district. This means that the same child could be diagnosed with autism, Asperger’s, or PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), depending on the supportive services available at the time of diagnosis.

Though autism and Asperger’s (and PDD-NOS) are presented as very different (though related) conditions, they are often mixed-and-matched by doctors, disability counselors, and schools, which is why I began to use the term Autism Spectrum (and usually just Spectrum) instead of focusing on the subtypes. You can miss a great deal of crucial information about individuals if you focus on a diagnosis that currently exists in a political battle zone.

2012 update: I now use the term autistic and autistic person, in deference to the civil rights workers within the Autism community who do not want to be called “a person with autism” or a “person who has autism” (and definitely not a “person who suffers from autism,” gah!), because it treats autism as a disease and suggests that autism could be separated or subtracted from them. Instead, they prefer the neurodiversity-positive autistic or autistic person.

I learned a great deal on paper about Autism Spectrum conditions, but what jumped out most significantly for me was the repeated assertion that autistics are not socially adept because they are “mind-blind” and therefore unempathic. This hypothesis is championed by British psychopathology professor and researcher Simon Baron-Cohen, who theorizes that Spectrum conditions involve a lack of function in the mirror neurons that allegedly help us empathize with each other. Hmmmm.

As an empath — or a person who is aware that they read emotions, nuance, subtext, undercurrent, social space, relational behaviors, and gestural language to a greater degree than is deemed normal — I was a little bit unnerved. I wondered: Will I be meeting people who are my diametric opposites? Will I disturb or unsettle them with my overabundance of empathy? Will they feel unsafe and alien around me — or will I feel that way around them? How should I behave? Can I do this job?

As it usually happens with marginalized populations, the information I received from the academic and counseling-based books only gave me a small piece of the whole story. Those books were merely describing autistic people from the outside, so I went back and got books by autistics themselves (such as Donna Williams, Kamran Nazeer, Temple Grandin, and Sean Barron). These stunning autobiographies helped me understand more about how painful and confusing it had been for these people to grow up in what is called the neurotypical world.

Oh, how neurotypical of you

In order to avoid labeling autistic people as damaged or abnormal, the word neurotypical was coined in the autism community to refer to people who were once called normal. (An aside: My father says that Normal people are the ones you don’t know very well yet.) The word neurotypical performs a kind of protective function that — in theory — neutralizes harmful language and treatment that might otherwise be directed at autistics.

However, social behavior that is considered correct in the majority neurotypical culture (eye contact, speaking in turns, paying attention to what neurotypical people think is important, etc.) is called neurotypical too, which is really another way of saying that this is the expected and correct behavior. Using the word neurotypical as an adjective (neurotypical behavior, neurotypical gesture, etc.) is really not neutral in practice. It’s actually kind of oppressive.

I saw this almost immediately as I met with each student and his or her parents. The students were often coached — right in front of me — on how to behave, what I wanted to hear, how I wanted to be addressed … and this made me very uncomfortable. I heard a few of the parents use the word neurotypical as a kind of slam: “A neurotypical wouldn’t ignore a direct question, so wake up!” Ouch! I continually wondered, just who is unempathic here?

The concerns I had before I met these students really faded away as I witnessed constant (well-meaning?) insults to their personhood and dignity, and their tremendous struggle to find a way to belong in the neurotypical culture. Within a day or so, my new focus was on how to shield them from the everyday oppressions of neurotypical expectations. I began to talk about neurotypicals in joking ways: “Oh, how tedious and neurotypical that is!” Or I’d affect a Homer Simpson pie-loving voice and say, “Mmmmm, Asp-burgers!” as if it were the most delicious condition to have. It was a good laugh getter.

But more than that, it was an empathic entryway into the world of these students, who I almost immediately called my friends. These were people struggling mightily to live in a world where they weren’t welcome, understood, or in many cases, seen as real human beings. The mind-blind, unempathic caricature is a case in point.

The mind-blindness of everyday people

I knew from my early reading that autistic people were allegedly mind-blind — that they didn’t have a functioning idea of the “otherness” of people, which meant that they thought everyone knew what they knew, liked what they liked, and thought how they thought. This mind-blindness, so the story goes, meant that autistic people were unempathic, since the current and very simplistic definition of empathy is the capacity to feel (not think, not surmise, not guess, but feel) what another person might be feeling (if you’re interested in a more nuanced approach to empathy, primatologist Frans de Waal has a much better and more useful nested definition).

In my first few days with my new friends, I looked everywhere for this mind-blindness and this lack of empathy — but I didn’t find either one. I didn’t see any lack of sensitivity; in fact, I saw hypersensitivity — painful hypersensitivity. And I didn’t see mind-blindness either; instead, I saw a continual, time-lagged confusion about what was going on with and between neurotypicals.

I understand this confusion very well, because with my overabundance of empathy, I often find neurotypicals frustrating and emotionally incomprehensible. Here’s why:

The following are normal everyday behaviors among neurotypicals: lying about their feelings; avoiding sensitive subjects that are glaringly obvious; leaving important words unsaid; pretending to like things they don’t like; pretending they’re not feeling an emotion that they’re clearly feeling; using language to hide, obscure, and skirt crucial issues; attacking people who frighten them without ever realizing they’re full of fear; stopping all forward progress on a project without ever realizing they’re full of anger and grief; and claiming that they are being rational when huge steamy clouds of emotion are pouring out of them. Neurotypicals are often emotionally exhausting.

And here’s the big ugly secret: Neurotypical behavior isn’t empathic — in fact, it’s often counter-empathic and filled with noise, static, emotional absurdity, and confusion.

But even amidst all of this static and confusion, many of my autistic friends were achingly, scathingly aware of the social world around them. I mean hilariously, dead-on aware, if you would only listen to them. In fact, they were as uncommonly aware of the social world as some of my wildly empathic friends were. What I saw in these people was not a lack of empathy, but a difficulty in dealing with an often-overwhelming sensory onslaught, from the outside world, from their struggle to decipher neurotypical social absurdities, and from inside their own brains.

My autistic friends were incredibly sensitive to sounds (especially very quiet sounds that many neurotypicals can ignore), colors, patterns, vibrations, scents, the wind, movement (their own and that of the people around them), the feeling of their clothing, the sound of their own hair and their breathing, food, touch, numbers, animals, social space, social behavior, electronics, the movement of traffic, the movement of trees and birds, ideas, music, juxtapositions between voice and body movements, the bizarre, emotion-masking signaling neurotypicals call “normal behavior” … many of my friends were struggling to stand upright in turbulent and unmanageable currents of incoming stimuli that could not be stopped, bargained with, ignored, moderated, or organized.

In short, my autistic friends were overwhelmingly, intensely, unremittingly, outrageously empathic — not merely in relation to emotions and social cues, but to every possible aspect of their environment.

My friends were essentially on fire most of the time, and this often created a great deal of emotional turmoil, as you can imagine. However, because they struggled with communication and socialization, it was hard for my friends to address or deal with their often intense reactions. Some would completely withdraw, some would try to connect to others by launching into monologues, some would engage in “stimming,” which is a repetitive action that can bring some sense of peace and control, and others would lash out. Being on the Spectrum is a very difficult thing when the world around you — with its constant noise, confusion, emotional inconsistency, and demands for attention — is built for neurotypicals who aren’t aware that everything is engineered for their comfort.

The mind-blindness of neurotypical privilege

The lack of awareness neurotypicals have — their unwitting acceptance of their world “the way it is,” without concern for the needs of others — is called privilege in sociology. For example, a young white man who lives in Northern California in 2011 and states that racism is no longer a problem is speaking from the ignorance of racial privilege. He may not be cruel or inherently racist himself, but from his social location, he cannot see or experience any direct racism; therefore, he mistakenly infers that racism doesn’t exist. Privilege is a form of mind-blindness that is, sadly, absolutely common in neurotypicals.

Neurotypical privilege relies upon the same unaware and insufficient reasoning as racial privilege does: So if I don’t experience the sound of the dryer next door as being extremely loud, then it shouldn’t bother you, and you certainly shouldn’t start rocking, flapping your hands, hitting yourself, or pulling out strands of your hair in order to deal with the aural overload. Or, if you know two people who have been fighting for months on end, and you clearly understand all of the issues that they’ve been ignoring, then you should never, ever speak aloud about it, because that’s not how we do things! It’s rude! Wake up and act like a neurotypical!

What? Ouch! This “normal” social behavior — this insensitive and emotionally incongruent behavior — is only deemed normal because neurotypicals agree that it is. Neurotypical social behavior isn’t objectively correct or better than any other way …. in fact, neurotypical functioning is tremendously problematic, and as I wrote above, it is often deeply unempathic as well.

Neurotypicals who learn to manage in the social world aren’t displaying signs of superior mind-sight, functioning mirror neurons, or a healthy dose of empathy. Neurotypicals — for whom mind-blindness and a lack of empathy are common, everyday behaviors — learn to manage because the neurotypical social world was created by them and for them.

Furthermore, this idea about mirror neurons being healthy in neurotypicals and unhealthy or deficient in autistic people … it’s only a hypothesis; it’s not a fact. Mirror neurons are not fully understood yet, and it’s not clear whether the original findings in primate studies actually translate into human neurology. This 2008 paper points out eight problems in the mirror neuron hypothesis, and researchers are working to get to the bottom of the real story.

In 2010, neuroscientist Ilan Dinstein and colleagues performed an fMRI brainscan study on 13 autistic adults and 10 neurotypical adults to test whether the mirror neurons of autistic people are deficient, but he didn’t find any evidence that they were. The mirror neurons in the autistic adults were normal. You can see a video about the study here.

Dr. Marco Iacobini, a neuroscientist at UCLA who is a vocal proponent of the mirror neuron deficit hypothesis, thinks that a study with a total of 24 people isn’t large enough to draw conclusions from, but Dr. Dinstein disagrees:

Dinstein stands by his team’s conclusions. The number of participants he examined is typical for brain imaging studies, he says, and their autistic participants, though high-functioning, possessed the most extreme form of autism spectrum disorder, not milder forms such as Asperger’s syndrome.

He supports a different theory for autism: that it is the product of “noisy brain networks” that don’t communicate as predictably as those in normal people. He says his latest study offers support for this, as his team noticed more variability in the brain activity of people with autism, compared with controls.

He plans to probe this theory by searching for noise in other brain areas in people with autism. From NewScientist.

Noisy brain networks. Overwhelmed by incoming stimuli. Hypersensitive. Or, as I said above, “… overwhelmingly, intensely, unremittingly, outrageously empathic — not merely in relation to emotions and social cues, but to every possible aspect of their environment.” It seems that the real story of the Autism Spectrum is yet to be told, and you know what? It’s not going to be told by neurotypicals unless they learn to check their privilege at the door.

Here’s something that might help. This video is an awesome invitation into the inner life of a non-verbal autistic person, the late Mel Baggs (here on YouTube as silentmiaow). Mel’s website is here.

In the first part of the video, Mel shows you their non-verbal language and the way they interact with their environment. In the second part, Mel uses a program that interprets typing into speech so that they can explain their native language to neurotypicals.

Mel writes: This is not a look-at-the-autie gawking freakshow as much as it is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not.

Mel’s mastery of both languages is awesome, as is their ability to explain the “constant conversations” they have with all parts of their environment. This is a powerful commentary on neurotypical privilege — and it’s a real lesson in empathy.

In part 2: Speaking directly with Simon Baron-Cohen