The Accidental Autist: Empathy Made Me Do It

by Grayson

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.

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The Silliest Things Make You Cry Sometimes

by Devon Alley

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.

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On Sensory Empathy

by Rachel Cohen-Rottenberg

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.

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The Data Myth

by Brenda Rothman

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.

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On Empathy and Experience

by Kate Goldfield

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.

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Autism and Empathy: The Car Accident

by Kitty Kat

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.

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On Empathy

by Suz

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.

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Aspie Empath

by Nikki

Just a few months ago, I was diagnosed as being on the spectrum by a very experienced psychiatrist who specializes in autism. I am also an empath — an extreme empath, at that.

But wait. Autism and empathy — the two just don’t go together at all, do they!? Autistic people are cold, robotic, and uncaring; like psychopaths, they are simply unable to feel for another, incapable of empathy. Right?

Wrong. For years, I believed that I couldn’t possibly be on the autism spectrum because of damaging stereotypes like these. Despite having many symptoms of an Autism Spectrum Disorder (ASD), I thought that couldn’t be autistic because I am exceptionally empathic. I began to question this stereotype after communicating with autistic people on the Internet. Some of these people were uncannily similar to myself. Since my diagnosis, I have discovered many others like me, both men and women, who are extraordinarily sensitive to the pain and feelings of others, and a percentage of them also struggle to cope with having very little sense of self. At last, current research is revealing that autistic people can possess high levels of empathy.

I have read various theories and studies that say that people who hyper-empathize have overactive mirror neurons and an extreme female brain, and are much more likely to be diagnosed with a personality disorder or some sort of psychosis. Prior to being diagnosed with an ASD, I was told I had Borderline Personality Disorder (BPD). There is much debate about what BPD is and isn’t, so I won’t be talking about it here, except to say that I am very impulsive, not at all logical, and operate on a different plane through emotion. I am also very analytical and solitary, and fit the classic presentation of how ASD manifests in females. Yet autistic people supposedly have an extreme male brain, lack of empathy, and are highly systematic. Many do fit the stereotype, but many others, myself included, do not. Clearly, the reality is far more complex.

I cannot speak for everyone, but I was born super-sensitive. I lack any emotional skin. Everything hurts me. It is like walking around with your nerve endings exposed. Raw, agonizing, and torturous are words that describe how I feel on an almost continuous basis. I have co-morbid conditions, and I also am a rare personality type. I believe my personality does not have strong definition to it; I have more elastic boundaries, so I soak up others’ pain and emotions like a sponge. I feel that one of the reasons I am so intense and prone to extremes of mood is because I have great difficulty in separating my pain and emotions from those of others. And when I say others, I mean not only humans, but also animals, trees, plants — all living things, in fact. It is extremely distressing and difficult to live with this hyper-sensitivity. It is almost impossible for anyone who is not this way to be able to comprehend it.

There have been a few times that I have witnessed a person being hurt, or an animal killed or injured. As it was happening, I merged with and absorbed all the shock and pain. I had to hibernate for days afterward to recuperate. As a young child, I would try to save all the flies that had been caught on the sticky fly tape trap; I couldn’t stand to hear their desperate buzzing as they slowly died. I picked worms up off the road before they got squashed by cars or people, or got eaten by birds, or died in the sun. I vividly remember one of the family dogs running straight through a barbed-wire fence and being badly injured. The look of horror and pain on his sweet face, his frightened yowl — it still makes me cry to think about it.

Being a deeply intuitive, hyper-sensitive person, I’ve always felt as though I walk the line between the physical world and the veiled spiritual world, and I can sense things without knowing how. I cannot read people’s facial expressions well at all, but this slightly psychic sense is what I use to navigate this frightening world of people I cannot relate to. Whenever I come into contact with people, I get a sense of whether they are genuine or not. I pick up on vibes from people, and I get strange sensations in my body, like a tingling/fluttering sensation, or a pins-and-needles feeling, as I sense the essence of their souls. I can feel ill when I sense the true underlying blackness behind an individual’s “nice” exterior. I can usually detect the slightest hint of malice in a person, though there have been times that I did not listen to my intuition and paid the price.

I cannot stand to see anyone hurt or humiliated in any way. I am disgusted by “jokes” at someone else’s expense; I hate ridicule and barely concealed spite disguised as “humor.” Many times I have been told I am too intense, that I need to lighten up, and that I can’t take a “joke.”

I just cannot stand injustice. There is so much unnecessary nastiness, hatred, jealousy, competitiveness, and aggression in the world. It repels me. In the past, I have hated people for it, hated those who deliberately inflict cruelty on others. I now realize that this is an error — that I will self destruct if I perpetuate the cycle of hate. I don’t want to end up sour, bitter, and cynical, and there have been periods of my life when my extreme anxiety and mental torment have been impossible to bear. Nowadays, I try to turn all the powerful feelings I have towards trying to make my little corner of the world a happy one.

I feel passionately about the vulnerable — animals, children, the disabled, the misfits, the outcasts, the underdogs, and the rejects of society. Despite being hyper-emotional and empathic, I do not relate to most neurotypical people at all (with a few exceptions) and am nothing like them. This does not mean that I do not like them or respect them; many are kind and good people. I just cannot quite fathom the way they think and operate. Essentially, I am a loner, but I often get along great with various types of people who are atypical in one way or another.

I often alternate between feeling extremes of emotion or being numb, depersonalized, and disconnected. There is no in-between. There have been times that it is just too much to bear. I’ve spent years of my life completely numb and barely feeling anything at all. I simply switched off, shut down, and went into auto-pilot in order to survive. It was like being in a trance state. I often say “I don’t care” in response to things when the truth is that I really do care — too much, in fact — but feel unable to deal with it and the pain it would cause me. I think that this is my mind’s way of shielding myself from a barrage of emotions that are overwhelming and exhausting — a form of self-protection.

Just a few days ago, my husband, who has classic Asperger’s Syndrome, finally admitted the same things about himself. Since I’ve known him, he has always denied caring about anything, and appears very aloof to others. Nonetheless, I’ve always sensed that he was deeply sensitive underneath the icy, hard exterior, but wasn’t sure what degree of empathy he possessed. He said that he, too, had switched his empathy off in order to cope. Sadly, years of being misunderstood, along with harsh judgments from others, have taken their toll on him.

After many years in which I’ve felt as though I were wandering in the wilderness, I feel as though my true core is slowly waking up again. I see extreme empathy as both an ability and a disability. I am currently trying very hard to master it and use it. I realize that I cannot take the weight of the world on my shoulders, and that I need to shield myself and look after myself in order to be of any use to others. I have a few minor coping mechanisms: I need a lot of solitude and silence to regenerate and reflect; I find it essential to be around animals and in nature; and I have to limit and to be careful of what I watch on TV, as the news and graphic violence are unbearable to me.

Despite being so empathic, I am unable to express empathy in a way that appears genuine to others. I come across to some people (so I’ve been told) as aloof, cold, distant, and uncaring — none of which I feel inside at all. My facial expressions rarely reflect what I am truly feeling. I’ve been startled in the past when I have been accused of looking morose or hostile when I was, in fact, feeling quite happy. Other times, I have felt terrified, and yet I appeared to be quite serene, with a smile on my face. I am only affectionate with my child and my husband — no one else. I am very uncomfortable with touching and hugging adults. I’ve been told that hugging me is like hugging a plank of wood. I can never think of the right words to say, or I attempt to say something, and it comes out wrong. So, usually, I say nothing. I am irked by the assumption that if you show empathy (such as hugging someone who is upset), that means you care. I have witnessed how insincere such shows of empathy can be.

It is almost impossible to explain the way I am to others. The few times I have tried, I have been accused of arrogance, or simply told that I am way too sensitive and need to “toughen up.” Yet those people wouldn’t like it if I told them how insensitive they are. Before I knew about how extremely empathic I am, I believed the things I was told. I attempted to toughen myself up, to be “strong.” I forced myself to watch the news and graphic films, and to try and be like everyone else. It didn’t work. It was agonizing going against who and what I am, and it resulted in my feeling confused, conflicted, and suicidal. Knowledge of self has helped me gain much insight, and I will not go against my empathy again.

About the Author: Nikki is a woman with Asperger’s who blogs at Ethereal Aspie. Empath Not Psychpath was written expressly for Autism and Empathy.

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The Hurt Vehicle: One Boy’s Empathy

by Autism and Oughtisms

My five year-old son is an autism stereotype. He flaps his hands, walks on tip-toes, hums, lines up cars… The list goes on. And when he sees a car crash – in a cartoon or in a news piece – he wants to know if the vehicle is okay and whether it can be fixed.

I can imagine – and I know – that many would see this as evidence of a lack of empathy. I know that many would believe that he either hasn’t thought of or doesn’t care about the occupants of the crashed vehicles. I don’t see that at all. In fact, when it comes to the emotional distress of others, my son is the most hyper-sensitive person I have ever interacted with.

Considering what he can see, his concern for the vehicle’s welfare is an obvious reaction. He can see bent metal, burnt tires, and smashed glass. He cannot see – and I would not want him to see – the bleeding bodies or mangled limbs. He’s never been in a car crash, either. His experiential and observational context is as someone external to the event, who has no particular reason to expect the people who might have been in the vehicle to be hurt. For all he knows, there was no one in the car, and that’s why it lost control, or no one was hurt. To expand from his context to say he doesn’t care whether anyone was in the car, or whether anyone was hurt, seems unfounded to me.

Indeed, his concern for the state of the vehicle is often quite intense and heart-felt. He wants to know if it is okay and if it will be okay. Concern for a vehicle does not evidence lack of concern for people. In fact, it may be taken as evidence of hyper-concern for things the rest of us wouldn’t be bothered by – extended, in this case, to an inanimate object.

Earlier in his years, my son did struggle to read and understand emotion. I had to teach it to him, to help him pay attention to and make sense of it. He was able to learn it, and what an appropriate response to it might be. Would he have figured out emotion without my help? I don’t know. That’s like asking me whether he would have figured out how to talk in a sentence without speech therapy. Considering that his development has been different and delayed, rather than nonexistent, he quite possibly would have. I have no doubt that the speech would have taken longer to come in. In the same way, I strongly suspect that he would have learnt to recognise and respond to emotions, but my teaching sped up the process. Perhaps too much.

He has gone from seemingly indifferent to others’ emotions, to distantly fascinated by others’ emotions, to hyper-sensitive to others’ emotions. He reads the slightest narrowing of my eyes or the smallest movement of a cheek muscle. He is so tuned in to my facial expressions – and to my body language, too – that he is like a multiplication reverse-mirror. If I show a tiny piece of anger, he shows immense fear (I’m really not that scary); if I show a glimmer of happiness, his entire face lights up, his body relaxes, and he slips into play mode; if I show weariness, he’ll say I need a sleep. And if I try to fool him – show an emotion that doesn’t match my mood, for whatever reason – he always seems to pick up on it.

Being around someone so highly tuned into me is exhausting from a parenting perspective, since sometimes you need your child to think you’re angry when you’re not, or happy when you’re sad. I’ve had to really up my acting; I have to actually make myself feel the emotion I’m trying to convey, because only then will he fully accept it. It’s all the more exhausting because his reactions to my moods are so intense, often laced with anxiety or repetitive, fixated behaviour, and it can be hard to help him move on. His emotional awareness and sensitivity are a problem. For the sake of his own happiness, we need to teach him – and he needs to learn – how to regulate his reactions so that they are proportionate to what he is seeing; his extreme reactions and hyper-awareness are not serving him well right now.

It’s not just me who gets these reactions from him either (though I probably see the worst of it). He also responds strongly to his little brother and to his head teacher. He cares about his little brother being sleepy or sad or hungry, and he cares about what his head teacher thinks of him. He modifies his behaviour and words to clearly reflect those concerns.

I feel, sometimes, that maybe the closed-off world he once seemed to be in was protecting him from this potential overload — and that his immersion into a more interactive and multi-contextual world of experience has sent him into overdrive. I know we did the right thing with him, though; he is much happier now, and his skills and confidence have sky-rocketed with his growing experiences and interactions. But this means that I must help him to manage the consequences of that exposure. I need to help him to make sense of and manage this world, which in turn doesn’t seem to understand his reactions and perceptions.

My son, at least, is making the effort to learn. Most people do not make the corresponding effort to learn about and understand him. I am forcing them to, however; the ignorance and indifference of others are unacceptable if my son is to flourish in the world.

I don’t know the answers to every challenge and question my son encounters. It has been a long hard road for us, and every day, I learn more about him and about autism, but we’re getting there slowly and together: me teaching him, him teaching me.

So yes, my son cares about the hurt vehicle, but not because he doesn’t care about or is unaware of hurt people. His concern for vehicles might be the butt of people’s jokes about autism, but no one would laugh in the face of his intense and very real reactions when he sees other people in distress. He’s a boy who also notices and wonders about hurt animals and plants. A boy who sees and feels so much that it hurts me as his mother to see his struggle to cope with it all. His empathy is astounding.

About the Author: Autism and Oughtisms is the mother of two sons, a five-year-old and a one-year-old. Her elder son has classic autism. On her blog,  Autism & Oughtisms, she talks about her experiences parenting an autistic child, and discusses other autism issues and viewpoints. The Hurt Vehicle: One Boy’s Empathy was written expressly for Autism and Empathy.

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Theory of Mind — Whose?

by Spunkykitty

Since embarking on my intense detailed quest to find out about my own Autism, I have read countless articles, academic studies, books, and personal anecdotes about the one thing that causes the greatest and deepest anguish among Autists – the so-called lack of proper Theory of Mind.

My own mental and emotional state has run the whole range from the eureka moments, to concrete realisations, to self affirmation, to self-loathing and yes, common to many Autists who really care, an overwhelming drive to overcome and overcompensate for what we are incessantly told is our lack, our weakness, our negative handicap. However, from out of this quagmire, one nagging question has slowly arisen. If these wonderful clever reports are accurate, which no doubt they are to a certain extent, then why is it that the folks with so-called expert adeptness at Theory of Mind never seem to be able to figure out what I am thinking, feeling, or needing? Nearly half a century of existence, and I am still trying to expiate for my terrible Autistic “sins” — to no avail — even with a whole lot of explaining and positive overtures to find a common ground. Nope. Very little success.

I have found love and acceptance among a very very few, but these view me with a kind of sweet, patient, doting fondness and, sometimes, an over-protective instinct, rather than as an equal to be discovered, uncovered, savoured, and communed with. These wonderful people who love me so much, to whom I owe much of my survival, they love me to bits. But they do not understand me. And none of them has ever made the effort to even read one single book on Asperger’s Syndrome, even when I pleaded to them to do so. Nope. They are happy with their own perception of me. And should I even dare to be ungrateful? I don’t dare to revolt. So long as they accept that I am weird, I am odd, I am different, and just care for me, what more can I ask for?

I long for real depth of communion. Thus far, I have only found two individuals with whom I can speak freely and honestly, without the danger of shocking them, and with better than 50% understanding. They are far away — one in New Jersey, one in New Mexico.

Where are the people so clever at Theory of Mind? I have not met any, except for those who have been really clever to find my weak spot and use me, abuse me, manipulate me. Is this what neurotypical Theory of Mind is all about then? How to read others’ thoughts and intentions in order to dance around the campfire of a subtle complicated game of power? In that case, I don’t want to know. I don’t want to be a part of this grand “theory,” this epic convoluted drama of cruelty and delight in suffering.

That is what the academic studies never tell you. They just show you what you lack, compared to the others who have it. But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.

I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic — but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.

How could you say I have no empathy when I am thrown into the depths of hell, crying into the empty suffocating darkness as I resonate with your pain, your terror, and your grief? How could you say I have no compassion when I ache to be of help and comfort to you while you kick at my face? You want me to read between lines that you don’t even bother to write, you want me to see beyond my own world into yours, but you don’t deem me worthy enough to share it with me.

To those who think that having a Theory of Mind is so enviable, think again. Is not literal honesty, straightforward caring, and just being willing to listen when spoken to, is this not enough grace and beauty to offer to a world full of mental and emotional game-playing?

Theory of Mind. Indeed. Whose?

About the Author: Spunkykitty is an artist with Asperger’s Syndrome. This piece first appeared on her blog, Spunkykitty: My Wonderful World, and is reprinted here by permission.

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