Empaths on the Autism Spectrum, Part 2

Continued from Part 1 

After spending just two weeks as an academic liaison for twenty-two people on the Autism Spectrum (and getting a sense for their inner lives), I started to observe my own behavior more closely. I’m very sensitive to sounds, colors, movement, and social cues — I love patterns, numbers, and being alone, and I have intense (often excruciating) empathy. I wondered: Am I on the Spectrum?

I went home from work one night and took this Autism Quotient test, and got a score of 15:

Your score: 15

0 – 10 = low

11 – 22 = average (most women score about 15 and most men score about 17)

23 – 31 = above average

32 – 50 is very high (most people with Asperger Syndrome or high-functioning autism score about 35)

50 is maximum

Hmmm. Okay, so I wasn’t on the Spectrum, but I also wasn’t (as I had feared before I started the job) at the opposite end of the empathy Spectrum from my students. And yet, I could not reasonably call myself neurotypical either, since my empathy has — throughout my life — set me so far apart from average people. I continued to witness unmanageable empathy and sensitivity in my students (whom I now called my friends), tried to figure out where it fit in with the reigning theories about the alleged lack of empathy among people on the Spectrum, and went forward with my job.

My husband was accepted into a Master’s program in Nursing, and we moved away from that job within a few months, but I didn’t stop thinking about my friends on the Spectrum, about neurotypical privilege and mind-blindness, and about the subject of empathy.

Reclaiming my empathic title

Three years later, in 2009, I was asked to rewrite one of my books on emotions. This is a longer story, but I had worked for many years as an empathic healer, and had mistakenly framed my skills as paranormal or psychic. When I realized my mistake, I ended my career (in 2003) and returned to college to study sociology, social movements, and, well, everything.

I now understand why it was so easy to think that my empathic skills were mystical. Strong empathy is very unusual, and neurotypicals are deeply confused about emotions and empathy; therefore, my empathic skills were seen a magical thing. After studying intently and reorganizing my understanding of empathy, it was very nice to come back, rewrite my book from a non-paranormal viewpoint, reframe my work, and reclaim my title as an empath. (In my previous post, I described an empath as 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.)

As a part of the research I did for my book (The Language of Emotions: What Your Feelings Are Trying to Tell You), I read a book by two people on the Spectrum: Dr. Temple Grandin and Sean Barron. Their book, Unwritten Rules of Social Relationships is a fascinating look at two individuals who have very different experiences on the Spectrum.

Sean Barron is a male whose inner experience of autism has been extremely emotional, while Temple Grandin is a female who reports that her inner experience was and is primarily unemotional. This book is nicely balanced by Barron’s emotional perspective, and together, he and Dr. Grandin provide an excellent portrayal of what people on the Spectrum deal with emotionally and psychologically.

It’s a great entrée to understanding both the Autism Spectrum and the ways that neurotypicals intuitively understand social rules even though they weren’t directly taught about most of them. As I wrote in my previous post, neurotypicals understand social rules because those rules were socially created by neurotypicals for their kind of minds … it’s not because neurotypical social functioning is objectively correct or better than any other way.

As I read the book, however, I found myself arguing with Temple Grandin — not just because I had so closely observed highly empathic people on the Spectrum, but also because she was holding on very tightly to the old “emotions versus rationality” idea that isn’t supported by current neurological research.

We understand now that emotions are an irreplaceable part of rationality, decision-making, thinking, memory, and especially learning. In truth, we can’t be rational without our emotions, but I understand Dr. Grandin’s struggle to overcome an emotional functioning that was totally unhelpful to her.

If you asked her outright, Temple Grandin would probably agree with the idea that she is mind-blind and unempathic (this hypothesis is championed by British psychopathology researcher Simon Baron-Cohen) — but as an empath, I beg to differ. In fact, I differ strongly.

Temple Grandin: An empath on the Autism Spectrum

In her books Animals in Translation and Animals Make Us Human, Temple Grandin describes her career in animal science. Dr. Grandin became famous for creating humane feedlots, factory farms, and slaughterhouses — and for designing and engineering many transportation and holding systems to get animals safely from one place to another. She has accomplished this by physically putting herself in the mindset of the animals she works with. Dr. Grandin describes kneeling down low and actually walking the paths the animals walk, looking at the machinery and surroundings from their perspective, and figuring out what scares or bothers them.

Dr. Grandin can set aside her human persona and think and feel as a cow, or a sheep, or a pig, or a chicken might — and from her vantage point, she can identify emotional triggers from these animals’ perspectives. With this information, she makes changes to the animals’ environments, and she designs feedlot equipment, stalls, loading platforms, and walkways that feel safe and make sense to the animals. Her designs help the animals remain calm and avoid panic-based injuries.

Her changes and her designs insure that the animals can be loaded and unloaded from medical and transportation equipment without fear or struggle, and she makes their lives (and their deaths) infinitely more tolerable. Dr. Grandin is a heroine; she single-handedly brought humane treatment to the meat-producing industry.

But get this: She did it by being able to empathize deeply with animals — not merely emotionally, but also visually, cognitively, auditorially, environmentally, socially, physically, kinetically, and relationally. Temple Grandin put herself in the place of the animals, gathered detailed information about multiple aspects of their unique, lived experience, communicated what they couldn’t, and made changes to address the troubles she unearthed.

Photo of Temple Grandin

Temple Grandin communing with a friend

This is what skilled empaths do.

Empathy is not merely the ability to understand cognitively what another person might be feeling, and it is not merely the ability to share an emotion with another person. Empathy is a socio-emotional skill that can help you enter completely into the world of another — and to translate what you sense into language and action. Temple Grandin empathizes deeply with animals; she is working as an empath. The fact that she reports having trouble deciphering human emotions does not in any way diminish her empathic skills; in fact, many of my highly empathic friends find neurotypical humans confusing.

I agree. Humans are very problematic both emotionally and empathically. As a young empath growing up, I had to learn how to connect the emotions people were clearly feeling with the lies they told about those emotions, with the repressive techniques they used to quash their emotions, and with the ways that they used other emotions to mask the ones they were truly feeling.

Before I learned how to identify, categorize, and create separations between myself and the wildly incoherent emotional behaviors of neurotypicals, I was on fire most of the time. Neurotypicals often let their emotions careen around like pinballs, and with some people, you can almost feel mismanaged and disowned emotions coming off of them like puffs of steam. Before I learned how to make sense of neurotypical emotional functioning, I reacted badly to the chaos. I was hyper. I withdrew. I lashed out with anger. I felt tremendous anxiety, and I used a lot of physical movement — especially with my hands — to manage my nervousness and confusion (I was stimming!).

As a child, I found humans totally exhausting, and I preferred animals. Animals don’t lie! They feel their emotions and share them honestly, and they don’t pretend. I love animals! They make being sensitive and empathic very comfortable and rewarding. Humans, not so much!

So Dr. Grandin might disagree strongly with me, but I see her as a fellow empath. I also see many of my friends on the Spectrum as empaths who, due to their troubles with organizing incoming stimuli — and to the reigning hypothesis that brands them as unempathic and mind-blind — have not been given the tools they need to make sense of the sideways and backward emotional functioning that neurotypicals call normal behavior.

Speaking directly with Dr. Simon Baron-Cohen

Earlier this year, my friend Edwin Rutsch, who founded the Center for Building a Culture of Empathy, hosted a question-and-answer session with Dr. Simon Baron-Cohen, the British psychopathologist who champions the hypothesis that people on the Autism Spectrum have malfunctioning mirror neurons that cause them to be unempathic and mind blind. Edwin posted these questions for me, and Dr. Baron-Cohen was kind enough to answer.

Karla McLaren: Dr. Baron-Cohen, is it possible that people on the autism spectrum actually have a near-neurotypical capacity for empathy, but are often overwhelmed and unable to organize incoming emotional and social stimuli ?

Simon Baron-Cohen: Yes, this is possible. We are only just beginning to understand this complex thing called ‘empathy’. In my book I suggest it has 2 components (cognitive and affective) though in the neural circuitry it looks as if at least 10 different brain regions may be involved. People on the autistic spectrum COULD have some of these brain regions working at a neurotypical level — this is something scientists could test. The idea that people on the autistic spectrum may be overwhelmed by emotional stimuli is also perfectly plausible. Thanks for putting forward a hypothesis that I hope will be testable. Simon.

KM: Thank you. I had a job supporting college-aged Spectrum people, and I read everything I could get my hands on — most of which follow your hypothesis about low empathy and incomplete or missing “theory of mind.” From all these books, I thought I knew the kind of people I’d meet… but I didn’t see a lack of empathy. Rather, I saw people who were overwhelmed by incoming stimuli and who had a very hard time organizing and understanding emotional cues. I’ve since worked with many Spectrum people, and I really think the theory is leading the data-gathering.

I think that if we all agree that Spectrum people lack empathy, we’ll ascribe labels to their behavior that obscure deeper inquiry. Sadly, the idea helps people treat Spectrum folks as aliens. The lack of understanding I saw “neurotypicals” routinely show for Spectrum people made me ask: “Just who is the unempathic person here?”

SB-C: Dear Karla, you make an excellent point that empathy is a two-way street. So-called ‘neurotypicals’ need to make an effort to understand what the world must be like for people on the autistic spectrum, and how to make people with autism spectrum conditions feel valued. Certainly, the idea of portraying or treating people on the autistic spectrum as if they were aliens is abhorrent. I also think your point that people on the autistic spectrum are “overwhelmed by incoming stimuli” is very important, since the implications is that under the right conditions, people with autism would show no empathy difficulties at all, if the incoming stimuli were not overwhelming.

On this view, any empathy difficulties might be secondary to difficulties due to the rate of information processing. I have some sympathy for this view, because I have met many adults with Asperger Syndrome who can cope with one-to-one relationships and are very caring within these, and only find it difficult when they have to process information in fast-changing social groups. Equally, I have met many adults with Asperger Syndrome who can display their excellent empathy when they have the “luxury” of considering all the facts “off-line”, that is, when there is less time pressure creating demands to respond in real time. These ideas also suggest new lines of research that the autism research community could follow up. Best, Simon

In fact, people are looking into these ideas. Neuroscientist Ilan Dinstein found that autistic adults had normally-behaving mirror neurons, and he is focusing further research on what he calls “noisy brain networks.” And cognitive neuroscientist Gregory Hickok has identified eight problems in the mirror neuron theory.

The hypothesis that people on the Spectrum are unempathic and mind-blind is just that: a hypothesis. It was an interesting first guess, but it’s not proving to be true — and sadly, it’s actually making the lives of people on the Spectrum more difficult and more painful.

As we’re seeing here on Autism and Empathy, people on the Spectrum and parents of Spectrum kids are reporting instances of not just empathy, but overwhelming empathy in this population. The fact that many researchers are unable to measure or identify this empathy is — in my empathic estimation — a function of:

  1. their incomplete understanding of what empathy actually is;
  2. their misplaced confidence in the mirror neuron hypothesis, and;
  3. their neurotypical mind-blindness about how disturbingly scattered neurotypical emotional behaviors usually are.

As Brenda Rotham noted here in The Data Myth, if you’re working with a flawed or incomplete premise, your data-gathering may lead you in very unprofitable directions. This is a problem in any area of science, but it’s a problem that has serious consequences when human subjects are involved.

As Simon Baron-Cohen wrote, my idea that people on the Spectrum may be unable to organize incoming emotional and social stimuli — which would completely skew any experiment that attempted to measure their empathy or their emotion recognition skills — is both plausible and testable.

Until those tests and studies have been completed and reviewed, it is not only wrong and damaging to brand people on the Spectrum as unempathic and mind-blind, it is completely unempathic.

About the Author: Karla McLaren is an author, social science researcher, a cappella arranger, and an empath. She worked as an empathic healer for twenty-five years, and once thought that her empathic skills were mystical. However, she questioned that and returned to college in 2004 to learn about the roots of her empathic skills. She discovered that empathy is a natural human ability, but it looks magical because most of us are so confused about emotions.

Karla is a Certified Human Resource Administrator and a Certified Career Development Facilitator. In her sabbatical from her healing career, she also had the opportunity to work as a Prison Arts Educator for the William James Association’s Prison Arts Project. She has re-written her 2001 book, Emotional Genius, to include excellent new information — not just from the academic world of sociology, neurology, social psychology, and cognitive psychology, but also from the mythological, poetic, artistic realm where true empathy and deep healing reside. This book is The Language of Emotions: What Your Feelings Are Trying to Tell You.

Empaths on the Autism Spectrum was written expressly for Autism and Empathy.

Share

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 Syndrome 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 now 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.

I learned a great deal on paper about Spectrum conditions, but what jumped out most significantly for me was the repeated assertion that Spectrum people 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 disorders involve a lack of function in the mirror neurons that allegedly help us empathize with each other. Hmm.

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 (you could also call me a highly sensitive person) — 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, 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 Spectrum people from the outside, so I went back and got books by Spectrum people 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 Spectrum 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 people on the Spectrum.

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 Spectrum 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 Spectrum 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 very 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 Spectrum 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 Spectrum 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 friends on the Spectrum 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 blind 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: 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 people on the Spectrum … it’s only an idea; 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.

Last year, 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 woman named Amanda Baggs (she posts on YouTube as silentmiaow). In the first part of the video, Amanda shows you her non-verbal language and the way she interacts with her environment. In the second part, Amanda uses a program that interprets her typing into speech so that she can explain her native language to neurotypicals.

Amanda 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.

Amanda’s mastery of both languages is awesome, as is her ability to explain the “constant conversations” she has with all parts of her 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

About the Author: Karla McLaren is an author, social science researcher, a cappella arranger, and an empath. She worked as an empathic healer for twenty-five years, and once thought that her empathic skills were mystical. However, she questioned that and returned to college in 2004 to learn about the roots of her empathic skills. She discovered that empathy is a natural human ability, but it looks magical because most of us are so confused about emotions.

Karla is a Certified Human Resource Administrator and a Certified Career Development Facilitator. In her sabbatical from her healing career, she also had the opportunity to work as a Prison Arts Educator for the William James Association’s Prison Arts Project.  She has re-written her 2001 book, Emotional Genius, to include excellent new information — not just from the academic world of sociology, neurology, social psychology, and cognitive psychology, but also from the mythological, poetic, artistic realm where true empathy and deep healing reside. This book is The Language of Emotions: What Your Feelings Are Trying to Tell You.

Empaths on the Autism Spectrum was written expressly for Autism and Empathy.

Share

I Feel for You

I feel sorry for those who think autistics have no ability to empathize. In my case at least, Asperger’s left me too vulnerable to the emotions of others.

When I was a little girl, I smiled until my face hurt. I was nowhere near as delighted as the constant smile seemed to indicate, but I was not miserable either. The unrelenting  smile was, I now believe, the product of rigid autistic thinking, which had led me to a false conclusion that like everything else in my world, there was a correct and incorrect path. Blocks must be stacked in a certain formation, every imaginable question had right and wrong answers. By that admittedly skewed, reasoning, the same principal must have applied to emotion. There was one correct emotion: happiness, which was always expressed with a smile.

Other emotions existed, that was irrefutable. Whatever other explanation could there be for tears or frowns? I avoided wearing such expressions on my own face though, because they and the emotions they represented were obviously incorrect. However I couldn’t seem to control the emotions of others, which was maddening, like sudden mind-reading abilities in the science fiction stories to which I  was always so drawn, a terrifying telepathy that inevitably landed protagonists in the equivalent of their planets’  rubber rooms.

I would not describe this way of thinking as healthy. I wasn’t simply irked when an adult or another child would refuse to comply with my orders to smile, I was furious and terrified and would not, could not, calm down until they did. What complicated matters more then, and continues to complicate them to this day, is my impaired ability to read facial expressions and body language. Like many autistic people, I’m capable of seeing macro-expressions, broad smiles, uncontrollable tooth-grinding rage, but more subtle expressions remain a mystery to me. I still can’t tell if the not-entirely happy person next to me is mourning the loss of a beloved friend, or the loss of a just-manicured nail tip.

Although I’m better equipped to handle all the input as an adult than I was as a child, between the sensory overload of loud music, bright lights, forced conversation (especially that autistic bête noir, the inescapable natter of small talk), my sensory processing abilities are already taxed. On top of all that, I often feel people feeling at me. Whether they notice my presence or not, I notice theirs, and my ability to process their emotions — the origin and nature of which I still have difficulty interpreting — causes me distress.

It’s a mistake to confuse an inability to sense with an inability to care. To the extent that I am able to resonate with other people’s emotions, I care intently. Further, I am aware that I am not aware of what people are feeling and compensate by the seemingly simple but actually complex method of inquiring.

I don’t like to think about the part of my life in which happiness was the only correct emotion. I have never written about it. But I recently had a conversation with one of my son’s teachers that sent chills down my spine. She told me about a little girl with the same diagnosis as mine, Asperger’s. Like me, she has always been verbal, but when someone she cares for does not produce a smile that lives up to her expectations she will crawl up on their lap and try to force their lips into what she considers a properly happy expression. I remember doing that .

My autistic son is minimally verbal, but there is no doubt in my mind that his empathy is as powerful of as that of those who can articulate it. He’s been using what words he has to ask me if our cats are happy. He’s been asking his teachers if a particularly close friend of his in school is happy. Not curiously or occasionally, but frantically and repetitively. No amount of reassurance seems to soothe him for more than a moment when he gets into one of these loops. Medication helps; we also have high hopes for social stories. Since we want to teach him that he has some power to influence others positively we make suggestions about concrete things he can do to help. Finally, we emphasize the transitory nature of emotion.

I suspect the notion that whatever is going on in a given moment will last forever is a common autistic fear. I have it, too. So when my son seems to be frightened by his own reactions to others’ emotions, I stroke his hair and I remind him that smiles and frowns are like rain and sunshine. Neither lasts forever. Just when you think the weather cannot ever change, it does.

I have faith that my son will resolve this confusion just as he has conquered other perplexing aspects of a world not tailored to his needs, but he’ll need help. He needs to learn that he does have power, not to change the weather of people’s moods, but to react to them in a compassionate yet not all-consuming way.

I am working on that skill myself, very slowly improving, but I believe his prospects are better than mine. What I do know from my own experience in this realm, and what I strongly believe when I observe him, is that pushing for greater empathy in an already hyper-empathetic child will not help and might even cause more distress and confusion for him. Empathy he’s got. Boundaries are what he needs. Shoring up some kind of emotional self-defense in one of the most caring children I can imagine, that’s what all of us who love him will spend the next few years doing. As parenting tasks go, I think it beats the hell out of trying to foment empathy where an exhausting abundance already exists.

About the Author: Carol Greenburg is an adult with Asperger’s Syndrome and the mother of an autistic child.  She is the East Coast Regional Director of the Autism Women’s Network. A frequent speaker at national conferences, area universities, parent support groups, and community-based organizations, she is a member in good standing of the Council of Parents, Attorneys, and Advocates (COPAA). I Feel for You first appeared on her blog, Aspieadvocate, and The Thinking Person’s Guide to Autism, and is reprinted here by permission.

Share

The Accidental Autist: Empathy Made Me Do It

I remember, as a young child, how I lived in my own world. Of course, back then I didn’t frame it that way. I was just living, just being me. The realization that I was not functioning sufficiently in the larger, outer world came in stages as I aged and people began to expect me to behave in accepted ways, of which school is the quintessential playing field.

School threw my differences into stark relief. It would be inaccurate to say I noticed this right away. I still lived, quietly satisfied, whole, happy, in my own world. Only as schoolmates taunted me, pushed me to the ground, laughed at me, and called me retard, did I realize I was doing something wrong. Only as teachers corrected me, prompted me to speak up, called me to attention, did I realize I was not behaving correctly.

Because I have always been a loving, empathic child, prone to internalizing others’ expectations and attempting to fulfill them, I began to work on fitting in. Paying attention in class. Learning to use words and intonation the way other children used them. I made it my supreme aspiration to behave appropriately, to meet their expectations of normalcy. And I succeeded quite well.

I learned not to rock back and forth. I learned not to make the face that “makes you look retarded,” as my friend J called it with exasperation. I eventually learned not to call my parents at 10 PM during a sleepover and beg to be taken home, when sensory overload from all that was unfamiliar had me in terror. I essentially learned how to recognize what was normal and what was weird, and I banished all things weird from my repertoire. I suppressed my own needs in order to provide what I saw others wanted from me.

This process, most intense in childhood, continued through adolescence and into adulthood; it continues to this day, though for years, of course, it’s been a question of tiny modifications, miniscule tuneups.

I also learned not to trust everyone, not even every adult. I learned to fear being seen as different, because sometimes it upsets people so much they hit you or destroy your things. Gradually, I learned that my right to live independently hung on my ability not to offend, weird out, or otherwise upset people in a position to decide my fate.

From an exterior vantage point–and, to be honest, from my vantage point for most of my life–all this was progress. I fit in. People were happy with me. I met expectations. This made me happy.

But the other direct result of this process is that I lost touch with who I really am. The person I experience as me, deep below my verbal self, below my connection to others, below my sense of time and persona, is inaccessible to me on a daily basis. She is buried under all the accumulated behavior that allows me to function as a familiar blip on others’ radar. I can only reach her when I am completely alone, in complete silence, with enough time stretched out in front of me that I can forget, for the moment, what needs to be done to keep daily life running.

Needless to say, this confluence rarely occurs in my life. Until recently, I didn’t even realize I needed it. The weird otherness of my early childhood had been tamed, banished, erased (I liked to think); the things about me that had upset other people were now gone. There was no hidden me.

Oh, I knew I needed “down time,” and I knew to avoid too many social engagements back to back. I’d learned that full-time work was a recipe for depression. I knew that, much as I wanted and loved them, mothering my children was somehow too much for me. Where other people whistled a cheery tune, I whimpered and folded into a ball, overwhelmed. All these things meant there was something wrong with me; that part of me that upset people was still there. My otherness. My supreme failure to be a regular person. I just tried to keep my meltdowns from imposing on others as much as possible, and to get back in the saddle as quickly as I could.

I now realize that what’s been wrong with me is that I’ve been living an impostor’s life. I don’t mean no part of my life has been real, of course; it’s all been as real as I could make it. As real as it could be, building on an externally imposed foundation. I’ve been really trying my damnedest. My love for my husband and children is real. My interest in my friends, my fascination with mathematics, my love for language are all real. My deep passions for tolerance, for embracing diversity, for honesty, justice, and fairness, are all real. Everything in my life is as real as it can be. I present myself as accurately as I can; it’s just that what I dish up is passed through a “normalcy filter” before it reaches the surface. And there, I strip it of everything weird; I make it cookie-cutter, acceptable, expected, usual. I add in all kinds of things that aren’t important to me. All in the service of making people happy. That’s where it all started, and that’s what continues to drive it today: I see what people want, and I try to give it to them.

But the thing is, the real me doesn’t meet expectations. She is different. If I’m ever going to reclaim her, I’m going to have to let go of my need to be a good girl who always does as she’s told. Not that I’m looking to raise hell and break rules; I’m talking about seeming weird, odd, freaky. Making people uncomfortable by just being the way I am. This idea scares me.

About the Author: Grayson is a woman on the autism spectrum who describes herself as “a brainy, quirky, synaesthetic, forty-something wife and mother of three.” This piece first appeared on her blog, Falling into Place, and is reprinted here by permission.

Share

The Silliest Things Make You Cry Sometimes

When you’re the parent of an autistic child, the silliest things make you cry. Sometimes, these are sad cries, like when A was about three years old, and she was kicked out of a dance class with the instructor talking down her nose at me: “I don’t chase children.” But, sometimes, these are happy cries — like the tears streaming down my face last night as I eavesdropped on A’s telephone conversation with one of her friends at school.

First of all, it’s amazing that A is choosing to collect phone numbers from her peers at school. Secondly, it’s amazing that she decides she wants to call them. I remember trying to encourage her to make phone calls to her friends at school just a few years ago, and how stressful it was to essentially have to coach her through the whole call — to explain to her the need to use proper greetings, that she had to wait to talk until she’d heard a voice on the other end of the phone. My daughter used to get frustrated with voicemail and answering machines, unsure what was going on and what was expected of her. She’d often hang up the phone without saying goodbye, or even without really ending the conversation, and on the rare occasions she would actually talk on the phone, she’d really just quote something to the person on the other end, generally not expecting a response at all.

In other words, telephone conversations were a little challenging for A.

Last night, however, A followed all of the appropriate social rules of phone calls. She used a greeting (albeit a sparse “Hi!” but I’ll take it). She asked to speak to T. She greeted T and asked her “What’s up?” And then, of course, she outlined the purpose of her call, which was solely to discuss a very specific BrainPOP animation that they both loved. I’m not sure what T said as a delay tactic, but she managed to get A interested in talking about other things first. It’s amazing how wonderful and intuitive her new group of friends are; they seem to know exactly how to push A  just a little out of her comfort zone without frustrating her, which I find really impressive. Whatever the conversation, T must’ve sounded a little down-in-the-dumps, because I heard A say:

“Why the long face? I mean, did anything upset you?”

Which is the point in the conversation I started crying.

Like many mothers, I was told when A was first diagnosed with autism that she would have a very difficult time empathizing with others — that, in fact, it might be nearly impossible for her to do so. And, like many mothers, I completely believed it. She didn’t really seem to form any social attachments with me or any other family members the way that other children seemed to do so. She seemed isolated, aloof, and completely unconcerned with everything happening around her. (Which just goes to show how little I knew at the time, since she tells me now that she can remember a morning back then when I was really sick, and she was afraid I was going to die.)

Yet here, nearing the age of 12, my daughter is concerned about her friend’s feelings. Not only that, but she has learned how to express that concern. And while her verbiage still is (and will likely always be) somewhat awkward (i.e. referring to a “long face” when she can’t visibly see the person she’s describing), she is still displaying real empathy here. I am so very proud of how far she’s come.

Which is, of course, not to suggest that there won’t continue to be issues. Throughout the conversation, she continued to badger her friend about the BrainPOP animation: “Okay, can we talk about the BrainPOP lever cartoon NOW?” But these requests were mixed in with a more natural flow of conversation: “Oh, that’s my dog. Yeah. About two weeks ago. He’s a Corgi and Terrier Mix. If my mom holds him for very long, she gets all itchy because she’s a little allergic.” It was really awesome to listen to her respond to questions, share information, and be extremely socially appropriate throughout her conversation with her friend.

And I know it’s silly to cry, even with joy, about these things. But I spent so much time worried that this would be something that would never come easily for A. And, actually, I know it’s something that doesn’t come easily for her now — I know she has to work twice as hard at navigating a simple phone call than another child her age. Still, she’s doing it — she’s making the effort, and she’s succeeding in keeping these friendships thriving. And I am so very impressed, and so very proud of these small moments, and of how far she’s come.

About the Author: Devon Alley is the mother of a child diagnosed with high-functioning autism. This piece first appeared on her blog, From Inside the Puzzle: Raising a Child with Autism, and is reprinted here by permission.

Share

On Sensory Empathy

In an interview on NPR, Temple Grandin talked about a lack of sensory empathy among non-autistic people:

Normal people have an incredible lack of empathy. They have good emotional empathy, but they don’t have much empathy for the autistic kid who is screaming at the baseball game because he can’t stand the sensory overload. Or the autistic kid having a meltdown in the school cafeteria because there’s too much stimulation. I’m frustrated with the inability of normal people to have sensory empathy. They can’t seem to acknowledge these different realities because they’re so far away from their own experiences.

Because of my acute auditory sensitivity, I’ve always had difficulties with ambient sound, especially in the spring and summer, when the “noisy season” begins. Neighbors run buzz-saws. Construction projects get underway. People mow their lawns. Drivers speed down the street blasting loud music with their car windows open. Motorcycles start up at 7:30 in the morning.

It’s painful and exhausting to my system. And yet, most people cannot intuitively put themselves in my shoes and understand why. They cannot take the perspective of my experience. They do not realize that what I need from them is sensory empathy.

An example: One beautiful summer day, my daughter Ashlynne and I decided to go out for some mother-daughter time, and we set off for the bead store. We had chosen to go there because the place is very spacious, and I thought I’d look for some interesting beads for my art projects. Unfortunately, I’d forgotten that they play Incredibly Loud Music there. It was so loud that when we walked in, I immediately stopped and said to Ashlynne, “Wait, wait! I need my earplugs! Now!” Fortunately, I keep an extra pair in my bag, but in my agitation, I couldn’t find them. Ashlynne offered to hold the bag open, and I finally located them. My hands were shaking, but I got the earplugs in.

The music was so loud that I could still hear it quite clearly, so I asked Ashlynne to ask the man at the counter to turn it down. He did. A little. I could still hear the music, and clearly, he had no idea of how it was affecting me.

Listening to loud music and talking to someone at the same time is impossible for me. Listening to loud music and and trying to think straight about anything is usually out of the question, and about ten minutes after entering the store, I realized that I’d reached my limit. I just wanted to cry. Why do people have to play such loud music? I thought. Why is that fun? If the place were quiet, I could have spent hours there.

But of course, the man at the counter seemed to be enjoying the music, and no one except my daughter had any idea of how I was experiencing the environment. So I took the beads I had found and went up to the counter to pay for them — at which point the man at the counter said, “Didn’t you mark down how much each set of beads costs?”

Oh no.

I said, “No, I didn’t see a pad and pencil for that,” so he gave me one. And then, I had to go back around this large store looking for these tiny beads, and I thought I was just going to break down and weep. And again, no one except my daughter had any idea about how the environment was affecting me. No one could read my body language, my subtle nonverbal cues, the look in my eyes, or anything else.

My daughter helped me find all the prices, and then we got out of there.

After this experience, I began to think about what the world would be like if people had sensory empathy —  if they could read the body language of autistic people properly, and if they could understand how acutely we experience the world. What if every public building and private business had to make its environment accessible for autistic people, with an understanding of our sensory experience?

Here’s how it might look:

1. No public building or private business would have Incredibly Loud Music, and all TVs would be turned off. After all, who can think straight in all that noise? In a world of sensory empathy, people would use headphones to listen to music in public.

2. Aisles in all buildings would be wide enough so that two people could occupy opposite sides of an aisle without inadvertently touching each other.

3. When in a public building or private business, people would use their inside voices. When outdoors, people would refrain from loud cursing, the uttering of racial and ethnic slurs, and other forms of aggressive verbal behavior.

4. People would not use cell phones within earshot of another person, especially when having private and emotional conversations.

5. Each place of business would post the food smells or other fragrances one might encounter upon entering.

6. If a neighbor wished to use a lawn-mower, chainsaw, or other power tool, he or she would tell others in advance, so that autistic people might not plan to spend the afternoon sitting on our porches, enjoying the peace and quiet.

7. Everyone would understand that it takes our bodies awhile to calm down after unexpectedly loud noises, and they would take care to let us know when they are about to embark on loud construction or demolition projects, so that we might go inside before they begin.

8. Every restaurant would have a quiet zone for dining.

9. Every building would have a separate, quiet waiting room.

10. No autistic person would be derided or harassed for stimming in public.

It would be a peaceful, considerate, and empathetic world. It would be the world of my dreams.

About the Author: Rachel Cohen-Rottenberg is a wife, mother, writer, and artist. She was diagnosed with Asperger’s Syndrome at the age of 50. A version of this piece first appeared on her blog, Journeys with Autism.

Share

The Data Myth

What’s a diagnosis for children who lack empathy, have an inability to relate to others, aren’t interested in friendships, and don’t experience a full range of emotions? If you answered “autism,” you have bought into the Data Myth.

These days, more people know about autism. Some of us have personal experience, either as parents or as individuals diagnosed with autism. And some people have, at least, heard the word through autism awareness campaigns. We think we know what autism is and we try our best to describe it. But as parents, professionals, and individuals who have experience with autism, the words we use to describe, teach, or tell stories are powerful. And sometimes our words are based on inaccurate paradigms of autism, perpetuating stereotypes that don’t reflect reality.

One subtle and stubborn myth is the idea that a child with autism doesn’t have typical emotions and can’t relate to emotions in others. The child with autism is described as if he were Data, an android from Star Trek: The Next Generation, who is unable to feel emotion and has trouble understanding human nature. The characterization of a person with autism as someone who isn’t affectionate or loving, who can’t understand someone else’s pain or suffering, and who must be taught appropriate emotions is part of the Data Myth. The myth has infiltrated medical, professional, and family discussions. It affects how we interact with our children, how we feel about our children, and how we treat them therapeutically. Children with autism are not androids who are less emotional, less affectionate, or less human.  They are real, complete, whole children who happen to have communication challenges.

Doctors are the first people we look to for explanations of autism, but many are to blame for spreading the Data Myth. For example, medical descriptions of autism often include lack of empathy as a symptom.  Sites that spread this incorrect stereotype include WebMD, The University of Michigan’s Psychology Department, Wikipedia, and EverdayHealth. And it is a myth.  Children with autism have empathy. They may behave differently. They may communicate differently. They may need more time to process the event and the emotions. They may even experience emotions too intensely. But they don’t lack empathy. Here’s what happens. Doctors observed a child with autism. The child reacted atypically, such as laughing when someone cries. The doctors jumped to a conclusion, rather than stating the fact.  That’s not science. Doctors don’t have an internal microscope that surveys the brain, heart, or soul and finds a gaping hole where empathy normally resides. What they observed is an atypical reaction and they didn’t investigate further. In fact, it could be an excess of empathy that causes an overwhelmed response, like nervous laughter. The same is true for the so-called symptom of a “lack of interest in sharing enjoyment, interests, or achievements with other people.” Doctors can’t determine the child’s inner feelings or “lack of interest.” They may see the child not interacting. The child may need help engaging with other people.  The child may need help communicating with other people. The child may even need help with enjoyment because of anxiety. But it’s not that the child isn’t interested in sharing things with people. It’s the same with “inability to relate to others” and so many other alleged characteristics. Describing children with autism with inaccurate assumptions furthers the idea that they lack basic human emotions. Doctors should know better.

Researchers are no less to blame. Scientific research is required to be unbiased. Researchers have ethical obligations to eliminate prejudicial paradigms from their research, but how do they describe children with autism?  In one study, a researcher wrote, “Faces fail to hold the attention of a child with autism.” Here again, that sentence is a conclusion, not a fact. The researcher does not know if the child is inattentive to the face. It could be the child is paying attention in a different manner, like using peripheral vision. It could be that the child is attentive to the face, but is overwhelmed by visual input. The difference between “faces fail to hold the attention of the child” and “child gazes at faces for less time” is a subtle difference, but it’s an important distinction. By implying that children with autism are not interested in people, the researcher adds what is presumed to be objective science to the Data Myth. We need researchers to state the facts, not reinforce a stereotype.

Programs for children are not immune from the Data Myth. It’s why I balk at programs that call for children to be taught by robots. Do we think that children with autism would learn better from robots, rather than people? Because our children would better relate to a logical, unemotional robot?  Because we adults can’t adjust ourselves to our children’s needs? It’s why I’m vexed by programs that use lab coats, checklists, and skills and drills for children, instead of play. All kids learn through play, even children with autism. In fact, children with autism might need play even more than other kids so they can deal with the anxiety, worries, and upsets they experience. We should ensure that therapies are playful and child-appropriate. And what about programs that suggest that children can’t learn social skills from their parents or siblings, and instead must be taught social skills by therapists? It’s also why I worry when people say that children with autism need to be socialized at school. Socialized? It sounds like they need to learn how to be civilized little humans. And at school? That idea presupposes that groups of kids are the best environment. It assumes that they aren’t already learning about relationships and social problem-solving at home. Programs for our children shouldn’t be satisfied with teaching them rote responses or superficial ways of behaving. Is the underlying assumption the Data Myth?

The Data Myth may even have influenced individuals in the autism community. When an adult with autism describes never having experienced love, that is her experience, but it’s not true of autism or of other people with autism. When a person with autism refers to his computer brain that uses images to understand emotions, that’s his experience. But it’s not necessarily true of autism. Individuals with autism have their own personalities, characteristics, and experiences.

And how does the Data Myth affect parents? If we buy into the myth, even subconsciously, we write off our children’s humanity. It makes us feel a distance that doesn’t have to exist. We may overlook our children’s emotional needs. We might even think they don’t notice us. Or love us. Or we might miss their unique expressions of affection, sadness, or loneliness.

We need to be on guard against the Data Myth and the stereotypes it perpetuates. Children with autism may sometimes react differently, but that doesn’t mean they lack human emotions. We need to think about, write about, and treat children with autism with the understanding that they experience a full range of emotions but have trouble processing and communicating them. We need to understand that they are interested in people and want to interact, but that they have sensory or communication issues that make it difficult. We need to challenge the medical community to rise above these stereotypes. And we need to see our kids as already whole and complete children, not as faulty.

The Data Myth is an flawed paradigm that needs to end.  It’s caused enough problems already.

About the Author: Brenda Rothman, the mother of an autistic son, writes about autism, parenting, and shoes on her blog Mama Be Good http://mamabegood.blogspot.com/. Brenda is also on Twitter @mamabegood, where she enjoys margatweetas, and on Facebook at https://www.facebook.com/mamabegood, where she spills coffee creamer.

All images are the exclusive property of Brenda Rothman and Mama Be Good and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Brenda Rothman at Mama Be Good. © 2009 – 2011 Mama Be Good.

The Data Myth first appeared on Brenda’s blog and is reprinted here with permission.

Share

On Empathy and Experience

This is a topic that has been brewing in my mind a lot lately – actually, on and off for the last month. I very much want to get it down on paper, so to speak.

The story starts on the night that I learned that Madeline (my roommate) had gone into the hospital. She is 93, and her ankle was swollen and bleeding. I did not know this all day Friday, until my other roommate came home around 9:30 to tell me.

That night, I was in a bit of shock. I felt so bad for her. I care very much about Madeline and am closer to her than to a lot of other people. I feel a connection to her even though there’s not a lot we have in common on the outside. So, that night, I was feeling very badly for her. A hospital is not a nice place for anyone, but especially when you’re 93. I kept remembering the stories she had told me about one time, years ago, that she had been in the hospital, and how much she had hated it, and especially how bad the food had been. I imagined her in that hospital room, lonely and frustrated and…. well, the main thing I kept thinking was that she was alone.

Maybe that could partly be attributed to my own hospital stay 13 years ago, when the primary thing I felt was loneliness. I just hated being there while everyone else was living their lives. It was not a pleasant feeling. So, accurate or not, I ascribed it to her. And I thought of the food, of course. And I felt a sense of powerlessness, of wanting so badly just to do something to help her, to make her feel better, to make her happy in some small way, knowing there wasn’t anything I could do. I couldn’t help that she was in the hospital, of course. I could write her notes and send her small gifts — and I did — but that wasn’t enough.

Somewhere in that night, as I frantically wrote disjointed thoughts to a friend while trying to process everything, I realized something. This feeling of wanting to help and feeling bad for someone  — a feeling that, it seems, for many people is hard to put into words —  is probably what other people had felt towards me when I was in emotional distress or had problems, and they wanted to help me, but didn’t know how. Or they thought there was nothing they could do. In that instant, I caught a brief glimpse of what I should have been feeling all of those numerous, probably hundreds of times that people had tried to unsuccessfully comfort me.

Why was it unsuccessful? Because, for whatever reason, most people can’t put their feelings into words. And there seems to be an unspoken agreement among NTs that they don’t need to put their feelings into words; their feelings, in certain circumstances, are automatically understood, since there are “typical” and commonly understood feelings for certain situations.

Now, take me. I do not know what the “typical” feelings to have in any given situation are. I have absolutely no clue! I need to hear verbally, in words, in very definite and descriptive and precise words, exactly what someone is feeling. I can’t tell from the person’s face. I can’t guess — or, if I  can, it’s a very rudimentary guess. If I’m lucky, I can make a logical assumption —  but logical assumptions, I have to say, are not very comforting.

I have always needed to hear the words when someone is trying to comfort me, but here’s the thing: Most people don’t have words. And that has proved disastrous to me, time after time. I would be crying, I would be revealing highly emotional things, and I’d look across to where the person was sitting and, as far as I could tell, they weren’t responding at all. They weren’t listening, I thought. They didn’t care, I thought. They didn’t understand, I thought — when, in fact, their nonverbal language was probably saying otherwise.

The feeling of aloneness and isolation that not feeling understood brought on made me feel 100 times worse. In fact, if often made me cross the line to hysterical, which would scare the other person and make the person become even more remote, which would reinforce the cycle, and it’d go on and on — sometimes only until I had exhausted myself in hysterics. I shudder to think about it now. Relationships get ruined this way, over a simple misunderstanding of communication, over not being able to read each other, but thinking you can.

If I apply this new-found knowledge to the present situation, I can get a glimpse into what the other person was feeling. Empathy. Caring. Wanting to make things better, but not knowing how. Powerlessness. But the person didn’t know how to put these into words, and I honestly had no idea the person was feeling it. It might sound thick, but it’s the truth. Autism is in so many ways a disorder you have to live out for an awfully long time before you figure out all the many and myriad ways it affects you and the people in your life.

I have a pang of sympathy and understanding for these people in my life now, when I think about this. Maybe a fleeting feeling of connection. But that’s all — fleeting. This knowledge is still too new. It’s like I’ve gotten a glimpse of it, and that’s great, wonderful, but it will take more than a glimpse, I’m afraid, for me to be able to put it in practice. But I will try. I will try to remember what I felt like about Madeline the next time I’m trying to figure out how someone is feeling about me. I don’t know if it will work, but I will try.

Why is my autism all about having to make logical connections in the place where, in others, emotional connections exist? I don’t know, and I’d really like to. But it’s like building the brain from the ground up, and if I do not have particular experiences to rely on to understand what a particular emotion feels like, then I might be able to understand it logically, might in time learn that this is what people are “supposed” to feel, but I may never really feel it, in myself or others. So many connections need to be made  — and unfortunately, the experiences, friendships, and social experiences I need to make them are so often missing, not through anyone’s fault, but just because my autistic traits make me far more unlikely to make these kind of relationships in the first place.

You may think I am saying that autistics don’t feel emotions towards others. I am NOT saying this. The myth that autistics are not capable of empathy is pure bunk. But I am beginning to think that, for me, it might have to be learned. I think that all emotions autistic people feel towards others are based on emotions they have felt themselves; and if they have not felt those emotions themselves, because they are missing the social experiences to have created them or are just developmentally behind, they won’t feel them.

So this makes it critically important that people with ASD be exposed to a wide range of experiences. But shoving them into experiences unprepared isn’t going to do much good; if a person is scared and afraid, as many ASD people are about new experiences, he or she will shut
down and not be able to connect with anyone or anything. So the key is to figure out a way to expose the person to new things while in his or her comfort zone, while the person is relaxed enough for his or her brain to be able to make the new connections. The autistic has to feel it’s safe to care about this person, has to feel “I like this person and she is not a threat,” and several months later, perhaps the autistic person will realize, “Hey, I actually feel connected to this person!” Fear and anxiety will prevent these connections from happening.

I have heard many ASD people say they have trouble connecting with and feeling close to others. I feel that if you protect yourself too much and never get close to anyone — even if you don’t realize you’re protecting yourself — you never feel what it is like to feel close to someone, and so therefore, you can’t feel what it is like for them to be close to you. It is not ASD people’s fault that they have trouble making friends, but it does seem to be a vicious cycle in many ways. You can’t just turn defense mechanisms off when someone asks; I think the situation has to be right for them to fall away.

Most people with ASD are quite smart in other ways. They find ways around their blind spots. The therapist who diagnosed me told me something like, “Instead of understanding things intuitively, you make these logical connections in your brain. But you make them so fast that it’s sometimes hard for people to see that you had trouble understanding the concept in the first place.”

Anyway, more thoughts about my life. These do not apply to all people with autism; they are just my life and experiences as I see them.

About the Author: Kate Goldfield is a young woman with Asperger’s Syndrome. A version of this post first appeared on her blog, Aspie from Maine, and is reprinted here by permission.

Share

Autism and Empathy: The Car Accident

One of the things I constantly hear is that people with autism cannot feel empathy. Let’s get this straight: This is crap. Just because they show emotions differently does not mean they do not have them.

Case in point: My youngest, Porkchop, was 1200 miles away visiting his dad when there was a car accident. Roger did not know the details –  just that the car had rolled, that his brother was fine and with his grandparents, and that we would be picking him up that Saturday.

For the next week, every time we went to the store, Roger wanted to buy his brother presents because he was in an accident and didn’t get hurt. This was his way of showing he cared. So, the whole theory that people with autism don’t care is junk.  Some just show it differently.

Roger didn’t know how to show it, so he wanted to buy him stuff. Finally, he settled on a Hot Wheels car, but then he was concerned that the car might remind his brother of the accident. After what felt like ages of our talking to him and telling him that the car was fine, he finally decided to get it for his brother and could not wait to give it to him.

We were not in the hotel for more than a minute, and he was getting the car out of the suitcase and giving it to him.

About the Author: Kitty Kat and her husband have four children, including her son Roger, who has autism. This piece first appeared on her blog, No Guile: Life and Other Stories from Autism, and is reprinted here by permission.

Share

On Empathy

One of the things about the Batsman’s diagnosis that I have struggled with at a deeply personal level is the notion that those with autism lack empathy. I remain unable to accept or get my head around our beautiful boy perhaps lacking the capacity to walk in the shoes of others, to share in experiences and feelings, to be there, as he grows, for someone else who might need support. How are relationships formed, in the face of this real or perceived lack? Will he be isolated socially if he doesn’t “get” other people? Looking into the future through this prism is terrifying.

I talk a lot with both of the boys. With the Batsman, in particular, I talk a lot about others: “What happened to X?” “He feels sad/angry/happy.” “We could give her a toy to help her feel better.” On and on it goes. The Batsman participates in the conversation happily enough, but you can’t always be sure that he gets what it all means.

I read this article today. It made me feel a whole world better about the empathy issue.

A groundbreaking study suggests people with autism-spectrum disorders such as Asperger’s do not lack empathy – rather, they feel others’ emotions too intensely to cope.

This fits with how the Batsman reacts in so many situations in his daily experience. When the Bowler cries (frequently, he is almost two after all!), the Batsman often becomes distressed — not just because of the noise but clearly because someone else is upset. Tears well in his eyes, and he just doesn’t know where to put himself, what to do; the overwhelm he feels is evident. Equally, if I am stressed or anxious or upset, much as I may try to hide that from the boys, the Batsman seems to have a sixth sense (empathy?) and will find a spot where he can curl up next to me, comfort and closeness the seeming goal. There are times he just instinctively seems to get it, to get how someone else is feeling.

And this week he showed us.

The scene
The end of a kinder session, children and parents streaming out of the playground and out the front gate. It’s noisy and chaotic, just the kind of scenario the Batsman finds difficult.

The happening
A little girl in the Batsman’s kinder group skips just ahead of us and then trips, tumbling to the ground.

What he did
The Batsman walks a couple of steps to where the little girl is on the ground. He crouches down beside her.

What he said
“Are you okay, Annie?”

My beautiful, beautiful boy. I believe you will have empathy, if you don’t already. I know it’s hard for you sometimes to deal with all the sensory information our crazy world throws at you. I will help you, Daddy will help you, and your beloved brother will help you.

We’ll get there. Together.

About the Author: Suz is the mother of two boys, one of whom has mild autism. This piece first appeared on her blog, The I Love You Song, and is reprinted here by permission.

Share