Empathy and Autism: Part 1

by Danette

It is often said that people with autism lack empathy, but I think that is not necessarily always the case. I think it’s not always recognized becomes sometimes the way they express it may be a little out of the ordinary. And yes, sometimes I think a lack of understanding of nonverbal cues can lead a person with autism to not always recognize when someone is upset (therefore they may not respond with empathy, not because they aren’t capable of feeling empathy, but because they don’t recognize a situation where it might be warranted).

When my twins were younger, they didn’t understand what facial expressions or things like crying meant. Obviously they cried, but they didn’t recognize crying as a sign of sadness or distress in others, so they wouldn’t respond “appropriately” to someone crying. We had to teach them to recognize and interpret facial expressions that meant happy, sad, scared, angry, etc. Once they learned to recognize those cues, they began to respond accordingly, which leads me to believe that it is more of a communication issue than truly lacking empathy.

So, I thought I’d share just a few examples of times when my sons have shown empathy. I recently posted about BH singing to LB to try to calm him down, and about both CB and BH being there for Little Bitty when he needed some help. Here are a couple of other examples — just a few out of many:

Last year, when BH’s teacher missed a few days of school to care for her mother, who was ill, she told me that he was the only one in the class who asked her how her mom was when she returned. He didn’t ask because he thought she expected him to (he just doesn’t think like that); he asked because he was genuinely worried about his teacher and her mom.

When BH and CB were 4 yrs old, BH was having a rough morning one day, because he wanted to stay home and play with his trains instead of going to school. So, he threw a fit about everything, from having to come downstairs, to getting his shoes on, to walking out the door, to getting in the car. Then, he went ballistic when I didn’t turn at the “shortcut” he wanted to take. (It goes by another school, so there was too much traffic that way.) So, after he’d been crying for a few minutes, CB turned to him and said happily “It’s October, [BH]!” He got no response, so then he said “Peekaboo!” BH got mad at him, and I told him CB was just trying to be nice. Then CB said “I have a great idea to cheer him up!” and started saying random things like “What about hearts? Does that make you happy?” He was so sweet. And it worked. BH calmed down and then wanted to play peekaboo with him. By the time we got to school, he was in a good mood.

Even Little Bitty, whose communication skills are significantly delayed, has demonstrated his ability to empathize with others by offering his sippy to me or dh when he seemed to think we were tired or thirsty. Not that we were really interested in having his slobberful sippy cup shoved into our mouths, but hey, it’s the thought that counts, right?

About the Author: Danette is the mother of three boys on the autism spectrum: Little Bitty, Bearhug, and Cuddlebug. Little Bitty has a diagnosis of moderate autism; Bearhug and Cuddlebug share a diagnosis of high-functioning autism. This piece originally appeared on her blog, Everyday Adventures, and is reprinted here by permission.


Awesome Big Brothers!

by Danette

I just have to brag a little bit about what Cuddlebug and Bearhug did this weekend. They are amazing big brothers and do such a great job helping to take care of Little Bitty.

Saturday morning, BH came into our bedroom looking for a tissue. He said LB had a runny nose, and he wanted to wipe his nose for him.

Later that day, CB told me he’d seen LB running around naked (because he likes to take his pull-ups off) so he went and found a clean pull-up and helped him put it on. He said we were still asleep, and he didn’t want to disturb us. What a sweetie! I was really impressed, because usually none of our guys have any problem waking us up if we’re asleep, no matter how minor the “emergency.” I told him I was really proud of him that he helped LB (and us!) by not letting him run around without a pull-up on.

I just thought that was really cool and wanted to share. After all, when someone is willing to wipe your boogies and help you into a clean pull-up, that is true love right there! LB is a lucky man to have such caring big brothers.

Of course, after I told BH how proud I was of him, he seized the opportunity to ask me if he could get any money for wiping LB’s nose (since he’s been on one of his “looking for extra chores he can do for money” kicks lately). I could tell from his face he didn’t really expect any but figured it was worth a try. I told him no, that’s something we do out of love, and after all I never got paid for wiping his and CB’s boogies when they were younger!

About the Author: Danette is the mother of three boys on the autism spectrum: Little Bitty, Bearhug, and Cuddlebug. Little Bitty has a diagnosis of moderate autism; Bearhug and Cuddlebug share a diagnosis of high-functioning autism. This piece originally appeared on her blog, Everyday Adventures, and is reprinted here by permission.


Special Interests and Empathy

by Bruce

The Holocaust has been an extremely strong pull in my life — a major interest. I have been drawn to many testimonies of survivors, and non-survivors whose writings survived, as well as interviews of survivors (Elie Wiesel, Etty Hillesum, Victor Frankl, Anne Frank, Simone Weil, Corrie ten Boom, and several others). Their many books seemed to come into my life as if drawn by a magnet.

I am not really interested in statistics, such as how many people were rounded up in Poland verses Holland (although I recognize the historical value). What has caught my attention has been first-hand accounts, stories by or about individuals or families. They reveal so much courage and caring in the midst of tragedy.

I went to the Montreal Holocaust Memorial Museum a few years ago. I took the train to Montreal and a taxi to the Memorial because I did not have the energy to drive (ME/CFS). Back then, the website said to allow about one or one-and-a-half hours to view the exhibits. I spent three-and-a-half hours in the Memorial. I looked at every video testimony, read every card identifying each exhibit, and studied each exhibit. I had almost finished when I had to leave in order to catch a train home. I had already missed the train home for which I had a ticket. I was very drained.

There was so much horror and tragedy (and I have to say triumph, too), but one image in particular caught my attention and broke my heart, perhaps more than any other. Burned into my memory is one black-and-white photograph that was mounted down low. I remember squatting down to look at it. There was an extremely emaciated young woman lying on a sidewalk with her back to a store window. She was propped up on one elbow. Her loose dress hung on her body, which had been reduced to skin and bones. How I wanted to scoop her up in my arms and bring her home to feed her. But I would have been only five months old at the most, and probably not even born, at the time of the photograph. What made matters worse was a chubby female leg entering the picture from the right. It was on a direct path to take the healthy woman past the starving woman without coming near her. The whole scene was devastating, and the image has stuck in my mind all these years.

My mind simply cannot process the Holocaust. It freezes whenever I try to think about it. But my heart breaks and aches and wants to hold all the people who suffered in it.

I will stop here. I think this post illustrates the depth of ”special interests” that Aspies are alleged to have. I hope it also shows a bit of the “empathy” that some claim we don’t have.

About the Author: Bruce is a 66-year-old man who recently discovered that he has Asperger’s Syndrome. This piece first appeared on his blog, Born 2b me, and is reprinted here by permission.


The Misleading Nature of the Deficit Model

by Rachel Cohen-Rottenberg

Those who danced were thought to be quite insane by those who could not hear the music.
—Angela Monet

I’ve never been shy about my feelings concerning the deficit model of autism. I object to its focus on “impairments” and its dismissal of our gifts as “splinter skills.” I dislike the hierarchy of human value it implies and, every time it leads a parent to believe that his or her autistic child will never feel love, I want to cry.

Lately, though, I’ve come to feel that the deficit model isn’t simply prejudicial, but entirely misleading.

In my view, the language of deficit hides the intrinsic nature of autism. In my experience, autism is not a condition of deficit, but of overabundance. I’ve never viewed my difficulties as deficits, because I spend a great deal of my daily energy dealing with an experience that is laden with perception and feeling. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world: color, texture, pattern, and motion. I have a vivid emotional and visual memory, both for events that have just occurred, and for experiences long past. I feel other people’s emotions immediately upon meeting them, and it’s in my nature to see things from a multiplicity of points of view.

When I look at autistic people who have been deemed “low-functioning,” I see people whose sensitivities make me look absolutely wooden. Our presentation is very, very different and, obviously, I can do a great many conventional things that others cannot. But intuitively, I know that they are not dealing with perceptual deficits. I see people whose overabundance of feeling and perception is both fundamentally different from mine and altogether overwhelming to their ability to function in any kind of normative way.

It’s this relative lack of normative functioning that brings in the deficit model. And, in terms of helping people to qualify for services and obtain needed assistance, it’s not a bad model. After all, if you need a service, you need to be able to document why. The problem is that once the deficit model is in place, it becomes impossible for most people to see beyond it. If you start talking about your internal experience, you get dismissed, because what becomes important is how you appear and what you do, not who you are or what you feel.

And how you appear is generally what shows up on an assessment, because the questions are geared to the surface level, and not much else. So, for example, if one were to ask whether I hold tenaciously to my own feelings and ideas, it might appear that I have difficulty seeing multiple points of view. But part of the reason I am so tenacious is that I’ve gone through a process of looking at things from so many different points of view that I would drown in the sea of other people’s perceptions if I didn’t make a judgment as to where I stand and what I believe. In arriving at a conclusion, I work through an immense number of possibilities and, once I’ve gone through the process, I generally form a strong opinion. It doesn’t mean that my mind is closed; it means that I’m not going to be convinced out of an idea or a feeling simply for the sake of social form or expectation.

Apparently, because I hold firmly to my conclusions, I can appear to be unempathetic to those who do not think as I do. If people only knew how intuitively I bounce from one person’s perception to another, how intensely I feel other people’s feelings, and how much mental and emotional discipline it takes to parse experiences that aren’t even on most people’s radar, they would see that my way of thinking is anything but inflexible—or easy.

Fortunately for me, I can speak, write, and express my internal life to other people. Where would I be if I didn’t have words? Where would I be if I weren’t able to navigate the world in a language it understands? Then I’d just look like a walking deficit model. And people without the empathy to see what’s going on below the surface would call me unempathetic, incapable of seeing things from other points of view, and without feeling. And they would be very, very wrong.

In describing autism as an experience of abundance, I don’t want to minimize the difficulties of living a life of intense perception, especially for those who cannot function in conventional ways. What I want to do is to signal that far from lacking the basic essentials of humanity, we feel our humanity acutely, and we suffer when others choose not to honor it.

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. This piece first appeared on her blog, Journeys with Autism.


Empathy: Aspies are Not Psychopaths

by Xanthe

Literature about Asperger’s is quick to assert that people with Asperger’s Syndrome lack empathy.  I find this cringe-worthy, especially when compared to psychopaths who are described as lacking empathy, too.  The psychopath enjoys making people suffer; the Aspie doesn’t. People on the autistic spectrum  are not psychopaths, and I find the comparison offensive.

Experts are now doing a U-turn and thinking people with Asperger’s actually have too much empathy, but can’t cope with how they feel, so they withdraw. They may not know how to express empathy in a socially acceptable way. I’m aware that I give off an indifferent and often unemotional exterior, but I am very sensitive inside. Part of that is for self-preservation, so I don’t attract bullies.

As a child, I recall being incredibly frightened when my father would lose his temper and shout in Dutch. I was frightened because he wasn’t his usual calm self, and I don’t like loud noises. Plus, I had no idea what I had done wrong – I assumed it was me that had done something wrong.

Anger became an emotion that I could not deal with as a child. I suspect my reaction to my father’s expressions of anger coupled with my strict Christian upbringing played a part. I spent my childhood and teens with a smile plastered to my face, and was always trying to be nice to people, even if they were mean to me.

I can’t recall being unable to interpret tone of voice like my son Xavier. I’ve been told that I would have acquired it – females acquire just enough social skills to “get by.” I remember watching a TV program about body language that I found enormously helpful. I used to wonder why someone I knew always curled their upper lip when they talked – I learned on the internet it was contempt/scorn.

My husband has coached me, in many situations, about people’s motivations – whether they are being manipulative or not. Sometimes, I’d become the scapegoat in a situation, and he was most supportive in helping me see that I didn’t act out of malice like the other party did. This was before we even knew about Asperger’s.

Sometimes, even he gets upset with me, because I use the wrong tone of voice or don’t respond the “right” way.

My first year away from home, I was flatting with other girls that I didn’t know. One was prickly to me, I think mainly because, at that stage, I was still a Christian. One day, she received a phone call and started crying. Apparently, someone she knew had died.  I felt bad for her but didn’t know what to do. I wasn’t sure if I should hug her, go and get someone to comfort her, or what. I asked if she would be okay. She was sitting on her bed, sobbing. I went to church feeling guilty, because I didn’t know what to do.

People with Asperger’s acquire social skills intellectually. Xavier has acquired some now, but it was weird when he had absolutely no comprehension of face expressions or tone of voice. It probably doesn’t help much that I have a rather neutral face expression (since I ditched the fake smile), even if I’m feeling angry.

It has sometimes led to frustration, especially when Xavier is insisting on joking around and being a clown when we are irritated with him.

I remember, one time, Leo was really upset by one of Xavier’s meltdowns. He was crying and left the house to take a walk to cool off.

Once Xavier had calmed down, I sat down next to him. “Do you realise your father was crying?” I said.

“I think, so,” Xavier said.

“How could you tell?” I asked. Xavier demonstrated sniffing noises in response. That was the clue that he thought perhaps his father was crying.  He didn’t recognise other signs, like his tone of voice or tears.

Xavier’s meltdowns make me shut down. I have to switch off and, sometimes, the only way to get relief from the screaming is to hide under my bed covers until it all stops.

I used to partially shut down when my mother would have emotional outbursts. My father and mother are opposites. My father was very calm (except when he lost his temper when I was young). My mother‘s emotions are on display. When she was upset, I felt it was all my fault.

I don’t like my emotions being on display. I found it very hard to deal with clinical depression because it was hard to keep my emotions at bay. Sad emotions spilled over and, for the first time, I felt emotions of anger, which terrified me.

When my grandparents died, I didn’t cry. It was too abstract for me to comprehend death. I didn’t really know one set of grandparents because they lived overseas.  I’d never met my genetic grandfather.

It’s like my emotions got stuck. But when my pets died, it was very upsetting to me. I was sent home from work one day because I was so upset after a pet rat died.

It wasn’t until I became clinically depressed that I cried for my nana, who lived with us when she became a quadriplegic after an accident.  I felt bad for her that she couldn’t use her hands anymore to weave flax kits or crochet blankets.

We went to see nana before she died. She was in hospital with a breathing tube and was on her way out.  My eldest sister (the most nurturing and maternal of me and my two sisters) stayed behind with nana until she died. She phoned with the news. I was matter-of-fact about it.

I didn’t go to nana’s funeral. I didn’t want to go to nana’s funeral – I thought it would be too scary with lots of people I didn’t really know wailing on a marae (Maori meeting house) all week. Plus it was a long, carsickness-filled trip to the cemetery. I don’t like cemeteries. I’m dreading my mother dying, because she wants to be buried there, too.

Music is a way I’ve been able to express my feelings, particularly when I became competent enough to  improvise. Once, I was improvising, and I became aware that someone was behind me. I turned around and a well-known artist was sitting behind me, mesmerised. He commented that I was so creative and my playing was beautiful.

Writing is my other outlet. I’ve always been about to express what I mean much better in writing than in person. I haven’t played piano for a long time.  I’d rather write instead.

About the Author: Xanthe is a woman with Asperger’s who is married to a neurotypical man, Leo;  their son, Xavier, also has Asperger’s. This piece first appeared on her blog, Asperger’s Child, and is reprinted here by permission.



by Looking for Blue Sky

It’s 6 am in the morning, and a little head appears around the bedroom door. It’s CD, my 9-year old with Asperger’s Syndrome.

“Mum, can I get up now, please?”

“Yes, of course, you can.”

Then he takes a few more steps, and leans over and gives me a hug.

“You know, if you’re sick or it’s a special day, I’ll give you a much bigger hug than this.”

“Thank you!”

“You’re welcome.”

“You know, that’s a really lovely thing to say.”

A slightly baffled silence and then:

“You’re 100% welcome!”

With that he leaves the room and goes downstairs. All is quiet so I get a bit more sleep.

Perhaps this sounds like a normal exchange in your house, but for us, this is just amazing. It’s only in the past few weeks that CD has decided that it is safe to go downstairs on his own. Often the day would start with him screaming and cursing at me from his room because he did not wake up at the ‘correct’ time. So I recently got him an alarm clock that he can set himself. Also, hugs from CD have not featured in my life for a long time, and I have really missed them.

I think today is going to be a really good day. 😀

About the Author: Looking for Blue Sky describes herself as a “mammy to three wonderful children who are all very different — one fab teen, one gorgeous girl with cerebral palsy, and one amazing boy with Asperger’s.” This piece first appeared on her blog, Looking for Blue Sky, and is reprinted here by permission.


Inside and Out: A Few Words about Empathy

by Nicole Nicholson

Got empathy? I do. And from all the testimonies I have read and heard, so do many other individuals on the autism spectrum.

Shocking? It might be, if you’ve believed up to this point that Aspies and other folks on the spectrum lack the capacity to empathize with other people – in other words, if you believe that we cannot feel or care about your pain.

There is lot of misinformation about autism spectrum disorders to begin with. What’s particularly damaging here is that some (and I emphasize, some) in the medical and mental health professions keep insisting that we lack empathy. For one thing, on many of the lists of symptoms and traits related to Asperger Syndrome I continually find such phrases as “lack of empathy” or “difficulty with empathy”. Another example is this article on the Global and Regional Asperger Syndrome Partnership (GRASP) website which cites a particularly damning quote from a 1999 article in the International Journal of Psychology:

“ …it would appear that both Asperger syndrome and psychopathy…share some common characteristics, notably the total absence of human empathy…”

What a load of bullshit! I thought. And I kept thinking this as I came across similar kinds of assertions in my later reading. What also got me thinking about this subject was an interview with Dr. Tony Attwood on this AWA Radio broadcast which I listened to last Sunday: he and the host mentioned recent studies that suggest that those on the spectrum are hypersensitive to the emotions of others — in other words, overempathetic (more about those studies later in this post).

I began considering the whole ball of wax with empathy. I remembered that in the past, when other people hurt, I hurt too. For example, there’s an incident that still sticks out in my mind from a prayer meeting that my fiance and I used to attend: there was a woman praying in a language I didn’t understand, but I could feel every bit of her words, which became more urgent, impassioned, and painful as the prayer wore on. I was crying by the end of her prayer.

And my capacity to hurt still rings true now. I ache when I find my stressed-out fiance at the end of a day, overloaded from dealing with caring for his elderly parents. I ache when my coworkers experience deaths in their families or other difficulties in their lives. I ache when I hear the pain inside the work of some of the poets in my community.

And it doesn’t seem to matter whether I know the people personally or not. Last week, a mural artist in our local poetry community died as a result of a lung condition. He was only 39. I’d never spoken to him, and my fiance and I had just seen him a few times, sketching in the corner at one of the local poetry nights. And we’d seen his work, which is phenomenal and vivid (and I do it injustice by even using those words to describe it) up and down one of the streets in town, on the sides of several buildings. But I literally hurt when I read the news posted on the pages of several of my friends on Facebook.

I’ll go even a bit further: I have trouble sometimes watching TV shows or movies that are emotionally evocative. It could be as simple as feeling embarrassed for a character on-screen, or it could be feeling hurt at how someone is being treated (for example, when watching the movie Office Space I literally wanted to jump through the screen and beat the crap out of Lumberg, the boss in the film for how he treats Milton, one of the computer programmers), or being unable to watch a movie more than once because it rips me apart inside (case in point — the 1991 Oliver Stone biopic about the The Doors: I could only tolerate watching Jim Morrison destroy himself once on screen).

So you can understand why I began challenging the conventional wisdom about empathy and Asperger Syndrome. I knew I was not emotionless and cold, and not lacking empathy. And wouldn’t it stand to reason that if this was true for me, it would be true for others Aspies as well? So I read, thought, and read some more, upon which I found two distinct causes of the so-called problem that folks on the spectrum have with empathy. Both of these are directly related to what goes on inside; in short, they explain part of the inner world of a person on the spectrum as follows:

  1. “Theory of Mind” difficulties. This basically means that someone with Theory of Mind problems with be less easily able to work out what someone is thinking or feeling. Humans typically do this by reading tone of voice, facial expressions, body language, and other non-verbal kinds of communication — something that people on the spectrum typically struggle with. This leaves them with a reduced ability to “read” people or situations — this includes things that I’ve mentioned such as tone of voice and facial expressions but which also leads to a difficulty reading subtle social cues.
  2. Hypersensitivity. This can come in a couple of different forms, but I’m calling attention to emotional hypersensitivity in this post. This 2009 article from The Star (Toronto, ON) reveals recent research findings that counteract the conventional wisdom that those on the spectrum lack empathy: in fact, the researchers suggest that they undergo “a hypersensitivity to experience”. In other words, not only can people on the spectrum sense the emotions of others, but they are be overwhelmed by them.  This idea is in line with the “intense world” theory of autism, which suggests that our nervous systems are hypersensitive and thus we experience stimuli more intensely than neurotypical individuals. More on the “intense world” theory in a future post.

Now that I’ve unpacked the two reasons behind the misconception that we lack empathy, I’ll put the pieces together. If you consider the fact that we have difficulty reading people in varying degrees, you quickly understand why we may not immediately respond empathetically in some situations. Sometimes, it may not be so obvious to us what you’re thinking or feeling: me, I’m good with immediately understanding basic, bold print expressions of emotion (anger, happiness, and frustration) — but I tend to miss the subtleties.  But once I know, I do care. I do hurt. And in the earlier article from the GRASP website, the researchers who were exploring empathy in individuals with Asperger Syndrome came to the exact same conclusion:

“…our data shows that people with Asperger syndrome have a reduced ability to read other peoples’ social cues (such as facial expressions or body language) but once aware of another’s circumstances or feelings, they will have the same degree of compassion as anyone else.”

Also, there’s something else to be considered about theory of mind difficulties: they could lead to the problem of initially not knowing how to respond or responding incorrectly. Lynne Soraya mentions this very thing in this post over on her blog at Psychology Today:

“From a young age, I incorporated that axiom [‘do unto others as you would have others do unto you’] into my belief structure.  But here’s where the problem comes in – what I would want ‘done unto me’ is entirely different than what another might want.  Likewise, ‘Putting myself in the other person’s shoes’ would have me doing something very different than what another person might envision doing in a similar situation.”

What I take this to mean is that I am more likely to assume that someone else wants the exact same thing I would want in the same situation. This may work great in some cases, but lousy in others. A perfect illustration of this is a big mistake I made when I was in high school with a classmate one day: he looked like he was down, I thought he wanted to talk and get whatever it was off his chest (just what I would want in the same situation). I was quickly rebuffed. I walked away, confused — and never found out what was wrong. Of course, as Soraya points out later in her article, neurotypicals make the same kinds of mistakes. So what’s so different about us? Are our viewpoints, approaches to the world, mental states, etc., different enough from neurotypicals that they result in more or more obvious kinds of misunderstandings? I am not sure myself what the answers to those questions are — and I would love to hear your thoughts on this.

But now, let us next consider the emotional hypersensitivity aspect of Asperger’s and other autism spectrum disorders. The article from The Star that I cited earlier has more to say about empathy:

“Studies have found that when people are overwhelmed by empathetic feelings, they tend to pull back. When someone else’s pain affects you deeply, it can be hard to reach out rather than turn away. For people with autism spectrum disorder, these empathetic feelings might be so intense that they withdraw in a way that appears cold or uncaring.”

So if even neurotypicals tend to pull back when confronted with the pain of someone else, what of us on the autism spectrum? Perhaps our pulling back or lack of response is a result of an intense inner response to the pain of others. One only needs to look to our various sensory difficulties to infer that a sensitive nervous system that has trouble with things such as florescent lighting, loud noises, itchy clothes, and light touch would also have trouble with filtering and processing the emotions of others — which of course, the evidence of such would come in through  the same sensory channels that process all of  the other stimuli I mentioned earlier. Or as my fiance put it when we discussed this issue a few days ago (he’d read Soraya’s article about Asperger’s and remorse before our discussion), how can the same person who has extreme reactions and temper fits when overstimulated not also be affected by other people’s emotions? To him, the logic of someone like this lacking emotion and empathy didn’t make sense. And it doesn’t to me either.

What are we to conclude? I think it is safe to say that we are sensitive and empathetic to the point of being overwhelmed by the emotions of others, and that we sometimes have trouble “reading the signals” and maybe knowing how to respond. That is the inside. What’s outside is our reactions and behavior, from which the wrong conclusions have been drawn. Given this, the “don’t judge a book by its cover” axiom fits best here. It is detrimental and perhaps even dangerous to make assumptions about a person or a group of people unless you really know what is going on inside.

I sincerely hope that this post has shed more light about the issue of empathy with those who have Asperger’s and other autism spectrum conditions.

Sources and Suggested Reading:

About the Author: Nicole Nicholson is an adult with Asperger’s who prose appears at Woman With Asperger’s, and whose poetry appears at Raven’s Wing Poetry. Inside and Out: A Few Words about Empathy appears here by permission.


We Need Theory of Mind for ASDs

by Patricia Harkin

Many people have an autism spectrum disorder (ASD).  To say this population has a “disorder” or a “disease” is misleading.  People on the autism spectrum have a different way of being.  It is like they are from a different culture, and they are poorly understood.

It is often said they do not have “Theory of Mind” – the ability to see things from other people’s perspectives and adapt to them.  We are just as guilty of lacking an “autistic Theory of Mind” because we, members of the supposedly “typical” population, do not (or cannot) see things from their perspective.  But this is what we have to do if we are to help make their life less difficult than necessary. I try to help people understand the Autistic perspective

If someone offered me a button to push that would make my son Brian a “typical” child, I would never push it.  If Brian were “typical,” he would not be Brian. He would not be my son.  I love him for who and what he is, and Asperger’s Syndrome merely describes him, how he thinks, and why he acts as he does. While I will do anything to help him do well in life, I will never try to change him. He has enriched my life in so many ways, and made me grow as a parent, a physician, and a person. He has brought me closer to God. He has made me stronger, less judgmental, and more compassionate.  He has made me a far better doctor.  I hope whoever is in your life with an autism spectrum disorder has done or will do the same for you.

When we talk about children with an ASD, we are using a shorthand for a particular pattern of strengths and weaknesses.  When I talk about the diagnosis with patients, I talk about having an “Asperger” type of brain. Carol Gray and Tony Attwood wrote a nice piece called “The Discovery of Aspie.”  You can find it at:

Click to access attwood10.pdf

I tell them about how all the things they are good at are because of their “Asperger” brain. At the end, I talk about how people with this brain have a hard time understanding “why people do what they do, why people say what they say, and they can have a hard time making new friends.” When Brian and I had this conversation, he thought for a minute, and then said “That’s me all over.” He was 8 when we had this conversation, and it wasn’t’ the end of it, but he was young enough to incorporate it into his self-image. He now says “I have Asperger’s Syndrome” in the same tone he would say “I have blue eyes” and “I have brown hair.”

About the Author:  Patricia Harkin is a developmental pediatrician and a mother to a son with Asperger’s Syndrome. This piece first appeared on her blog Delicate and is reprinted here by permission.


Proud Mama

by Darcy

For every person who thinks kids with autism don’t experience empathy for other people, I’d like to share this story.

As part of my job, I spent an afternoon recently at a homeless “campus” in downtown Phoenix. It’s an amazing place, really, that incorporates a shelter, job placement services, educational services, a post office, a library, and low-cost housing for people just starting to get back on their feet.

I picked up C from school that afternoon, humbled by what I had seen, and talked to him about where I had been that day. I told him I wished I could think of a way to help the homeless people I had seen, and C offered to let them all move in with us. His next idea was to give them his allowance, which then progressed into all the kids at his school giving their allowances, and finally ended up with his wanting to do a penny drive at his school.

And thus, “Pennies for Hope” was born. In a project lasting all of February, we set a goal of $500, which is about $1 per student at his school. Every week, C and I collected the buckets from each classroom and weighed them to see who had raised the most money. By last Friday, every single bank in town was out of pennies, and people were driving to the next town over to get them for their kids’ classes. More and more poured in, and this morning, we had a final count of 623 pounds of coins. The fire department hauled it over to the local casino for sorting and counting, and we ended up with $1,347.25.

C’s final words? “Wow. That will help A LOT of homeless people.”

C loading up the pennies in the fire truck!

C loading up the pennies in the fire truck!

About the Author: Darcy is the mother of C, a 10-year-old  boy diagnosed with high-functioning autism. This piece first appeared on her blog, What We Need, and is reprinted here by permission.



by Spunkykitty

I wondered today, whether the generally / commonly perceived ‘detachment’ or ‘emotional coldness’ observed by neurotypicals in Aspies is due rather to being too attached, too empathic, too sensitive, and too synchronistic to others’ states, and becoming utterly overwhelmed by the ensuing tsunami of emotion to the point of shutdown.

Today, I found myself consciously withdrawing from someone else’s intense pain, and, like a mimosa, my entire being began folding inwards, and I found myself wishing I could dissolve into nothingness — no, not disappear, but just cease to exist. Such was my emotional resonance to this person’s pain.

And I feel guilt. Deep guilt at being unable to be there for this person, to act as confidante, perpetual sympathiser, and strong comforter. No, I cannot cope. I cannot deal with those terrible, powerful, dark emotional outbursts, that ominously malevolent self-destructive aura.

If there is a God, if prayer has any power whatsoever, I pray for this person — a desperate prayer for healing and resolution to all that pain. I know what pain is like. I understand that when one is in so much pain, nobody else matters, nobody else’s pain counts, and nobody’s empathy means anything at all. I understand that in such a state, healing has to take place from within, and there is nothing much people around can do. Yet, I feel the horror and darkness vibrating and echoing in this person’s mind. I can hear the silent scream, the wailing of the soul, a broken child’s anguished cry. And I am petrified. I am seized with the urge to run away, to flee, as if trying to escape from the soundwaves emanating from within me. Futile impulse, yet so very, very strong it is.

How could some people still believe Aspies are cold, unfeeling creatures? How I wish I really were. Then I would not be haunted so by others’ pain. I would not fear another’s nightmare even again.

Detached? Nay. For this Aspie, definitely not so, and to make matters worse, I think I have forgotten where the Off switch is. I am heading for a meltdown of tremendous proportions if I do not take my entire self out of this situation.

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.