The Expression of Empathy

by Ginger Kennell

In my research on the experience of people on the spectrum, I have heard a consistent theme: people with autism lack empathy, the ability to understand what another person is feeling and share the moment with them either in excitement or consolation. A great deal of energy is put into teaching the autistic person to develop empathy and learn how to demonstrate it in social interactions. I think this idea is oversimplified, and it is built on the assumption that if you don’t behave as though you have empathy, it means you don’t have it.

Most of us are born with a set of skills that I often describe as “mind-reading.” It’s the ability to gather all of the information being transmitted from a person: energy level, body posture, gestures, facial expression, words spoken, tone of voice, the expression of emotion, and many other subtleties, and put them together to make a really good guess about what the other person is thinking and feeling.

Horses and other animals have what autistic author Temple Grandin refers to as “extreme perception.” In her book Animals in Translation, she states that “their sensory worlds are so much richer than ours it’s almost as if we [humans] are deaf and blind.” She goes on to explain how autistic people are a lot like animals in this way. Instead of gathering the more obvious information and synthesizing it into what we call the “big picture” like most people do, they perceive every detail. This is where the barriers between horses and those with autism begin to fade: in the ways they perceive the world around them.

Horses have tremendous emotional intuition, which is what makes them so effective in working with people with autism. Like those on the spectrum, horses easily pick up all the subtleties of an interaction, including the emotional field. The horse experiences emotions in a very compartmentalized way, without the complexity or confusing meanings that most people place on them.  Consequently, their only way of processing that information is to assimilate it, or feel it themselves, and reflect it back to the person from whom it originated. This means that when we observe horses acting out in an emotional way, it is likely that they are simply “mirroring” the emotion in their environment as a means of processing that information. In extreme circumstances, a horse may fight or flee in response to an intense emotional field.

I have experienced interactions with people on the spectrum who demonstrate this “extreme perception” that Temple talks about, and are able to intuit the emotions of a horse or another person with startling accuracy. Like a horse, their struggle is not in perceiving the emotion, but in making meaning out of it. The autistic person who picks up on another person’s fear of a situation, now feels overwhelmed and does not know what caused that emotion, how to make meaning of it, or how to respond to it. Because of this, the person may respond to emotion in a self-protective way, instead of an empathetic one.  These attempts at self-preservation may seem to others as irrational expressions of anger, panic, disassociation, or shutdown, because the emotional field is so overwhelming they must handle it much like a horse does, by absorbing it and reflecting it back to their environment, running from it, or protecting themselves.

It is important for all of us who regularly interact with those on the spectrum to recognize that the person’s inability to respond to an emotional situation in a socially appropriate way is not evidence of a deficit, disorder, or pathology. It is evidence that they possess a gift that the rest of us have not developed in the same way. Their emotional and intuitive connection with others and their environment is beyond our capacity to imagine it. They just don’t know what to do with the information. We can help them figure out what to do with the massive amounts of emotional stimulus in their environment: how to respond, how to take care of themselves. We can help them learn to make peace with their gifts, and how to put them into practice in a world where they are not understood.

It is clear to me that those on the spectrum are unique in their ability to perceive the world around them. This brings up many questions for me as I consider the implications of a growing population of such perceptive human beings. I wonder if humans are in the process of evolution. Are we moving toward a future where our intuition is more greatly needed? Are our most practiced methods for making meaning of emotion still serving us? Are those with autism leading the way to such a future? What do we have to learn from those on the spectrum? What do they have to teach us? And, how are those on the spectrum a “mirror” for our social culture as a whole? How are they acting as walking “barometers” for the intensity and pace of our lives?

I invite you to respond to these questions, and pose your own. Welcome to the conversation.

About the Author: Ginger Kennell has nearly 30 years of horse experience and has taught horsemanship to children and adults for over 16 years. She is trained in the discipline of Natural Horsemanship, an approach that emphasizes a process of learning the non-verbal and energetic language that horses speak with one another,  in order to create a trusting relationship based on clear communication, mutual understanding, and compassionate leadership. She is a Licensed Marriage and Family Therapist in the state of Washington, and holds memberships in the American Association of Marriage and Family Therapy, and the Northwest Behavioral Health Independent Provider Association. She has worked as a counselor, teacher, and facilitator in a wide variety of settings.  One of her interests is the remarkable ways in which horses can teach us to understand, communicate, and connect more deeply with those with autism.

The Expression of Empathy first appeared on the Interplay Academy website and is reprinted here by permission.



Can Emotional Overload Look Like a Lack of Empathy? Yes.

by Tara

I have watched my son’s emotional development for a decade with a sense of curiosity and fascination. His atypical emotional responses have piqued my interest. After years of keen observation, I would question anyone who suggested he lacked empathy as a result of his autism. Even prior to his diagnosis, when he was a toddler, I noticed the intensity of his reactions to the emotions of others.

I even suspect that his intense sensitivities and resulting withdrawal looks like a lack of emotion or disassociation from people or situations. I remember vividly his first haircut. Initially, his distress was within what I would call “normal limits.” After a little while, it escalated. I relayed my concerns to the hairdresser, who assured me that it was common for children to cry for their first visit. I felt uncomfortable, but not wanting to seem overprotective, I waited a while longer. His cry started to sound panicked. Just as I decided to intervene, his crying subsided, and I saw his eyes glaze over. He had a vacant look that scared me, and I realized I was too late. Just then the hairdresser commented, “Look, he has settled down.” I knew that he had not settled down. I knew that he had shut down. I vowed to always trust my instincts after that. I still feel a sense of guilt for not protecting him in that moment, even though I was just beginning to work out his unusual sensory issues. I started to notice that his heightened sensitivities were impacting him everyday. He was demonstrating an intensity of all his emotions — the most debilitating of which was fear.

Another memory that springs to mind when thinking about his unusual emotional reaction to others happened during a visit home to family. My husband and I, with our two small children, arranged to meet family members at the zoo — a great way to catch up with a large extended family and give the many cousins something fun to do. As we walked, my sister-in-law struggled to keep her five boys in check and resorted to yelling intermittently. With every outburst, my two-year-old son would drop to the ground and cry uncontrollably. It was a while before I would make this connection. I watched time and again this extreme reaction to his auntie’s harsh outcries. I tried my best to console him and help him to understand that he was not in trouble, to no avail. What I didn’t know was that he had virtually no receptive language, and so he didn’t understand my consoling words. What he did understand was painfully apparent. He was disturbed by the raw emotion that arose from these outbursts, emotion that affected him. This was not consistent with what I later understood to be a criterion for an autism diagnosis — “a lack of social or emotional reciprocity.”

Classic Moderate Autism was his final diagnosis just before he turned three years old. The years since his diagnosis have been a whirlwind, a crazy ride with heartbreaking lows and euphoric highs. We became accustomed to engaging in educational and biological interventions and IEPs, amongst other efforts, in an attempt to provide him every opportunity. Still there are countless examples I can think of to describe his sensitivity towards others that defy the very label that attempts to define him — the same sensitivity that existed prior to any intervention.

He attends church every Sunday. Crying babies have always distressed him. When he was old enough to articulate his concerns, he would ask why they were crying. He would ask if they were okay. Even with massive language deficits, he was able to express concern for them. Admittedly, the sound was possibly an assault on his senses, but he also appeared deeply worried about their distress.

Currently at school, when the teacher is speaking with students who are misbehaving, he struggles to keep his composure; without fail, he asks if he is in trouble. Once he has established that he is not, he will often suggest ways for the students in question to redeem themselves. The teacher has said that it unsettles him so badly that it warrants her sending him on a fictitious errand so that she can speak to the class without distressing him. He is overly sensitive to the plight of others even when it is not directly related to him.

Recently, he was watching a football game on television with his dad. His favorite footballer was injured and was taken off the ground on a stretcher. My husband and I looked over to see his eyes well up with tears. He turned to his dad and asked if the player was going to be okay. He was concerned. Admittedly, he was also sad that he might not see him for the rest of the season. But when I queried him, he said that he was “sad because he hurt himself.”

Darien loves to watch cartoon movies. His favorite is Wall.E, a clean-up robot who is left isolated on earth and meets and falls in love with a robot called E.V.E. I asked him why he likes this movie. He answered, “Wall.E is sad because he has no love. But E.V.E. comes and then he has a friend. Wall.E loves E.V.E.” He identifies with the robot’s loneliness and feels happy when the robot meets a friend who dispels that loneliness and makes him happy.

At eleven years old, he still struggles with language, which makes it difficult for him to express the intricacies of his emotions. When I was thinking about writing this piece, I decided to ask him a few questions based on an imaginary scenario. I asked him to imagine that I was badly hurt in a car accident and that I was in hospital. I asked him how he would feel if the doctor said I might die. He replied that he would be sad. I asked him to imagine that his sister was sitting in a chair in hospital crying. I asked why he thought she was crying. He answered that she would be sad that I was hurt. I asked what he would do if he saw her crying. He said “Give her a hug to make her feel better. I would say don’t worry, I will make you feel better.”

I remember him making a comment before we moved to the other side of the country. It reflects his awareness of the feelings of other people. He said “My kids (an affectionate term for the students in his class) are gonna miss me when I leave.” I assured him that they would. He revealed to me that he would miss them, too.

What I have observed is that if his sensitivity is too overwhelming, then his responses are not typical. For instance, the day we moved, his best girl friend visited to say how much she would miss him. Instead of responding in much the same fashion, he fidgeted with something he was holding in his hand and looked quite disconnected. One could assume he didn’t care. When I asked him later, he said that he would be sad and would miss her. He appeared uncomfortable with the overwhelming emotion and struggled to respond in kind. Thankfully, his friend knew him well and didn’t assume this reaction was a reflection of how he felt about her.

So how many other children with autism are like my son? I suspect that this oversensitivity resulting in shutdown is common. I also suspect it is not easy to research. Perhaps that is why we are bombarded with theory of mind and atypical response studies that would have us believe that our children lack empathy.

I know my son. It is dangerous to make assumptions about his feelings based on his responses. His responses are not typical and thus belie his feelings. Even though he struggles to comprehend situations due to auditory processing difficulties and confusing social nuances, he shows a depth of emotion that touches people who meet him. His recent merit certificate from school, “For making us all smile,” is not a trite comment. His naïve and uncomplicated view of the world, and his timid and kind heart, really does make everyone smile.

About the Author: Prior to raising her children, Tara worked as an Early Childhood Teacher. Her husband was previously in the Air Force, which required her family to move around every couple of years.  He is currently working as an Engineer in Project Management.  They have two children — a 12-year-old daughter who was pronounced gifted at three years old, and an 11-year-old son with classic moderate autism, diagnosed when he was almost three years old.  Prior to his diagnosis, Tara was enrolled in a psychology degree program that she put on hold to work with him.  Now that he is in upper elementary school, she has returned to study in order to qualify as an Educational Psychologist.  Her son also has hyperlexia and as such, Tara would like to further her studies in this area.  She and her family currently live in Queensland, Australia.


Understanding Why I’ve Never Understood the Things I Don’t Understand

by Femmeburger

Since my diagnosis, I sometimes feel like Alice after falling down the rabbit hole. The world around me looks so different. It is all too big, too loud, too bright, too everything. I’m chasing my own white rabbit, knowledge about living with Asperger’s, while seeking guidance from my therapist, the caterpillar. My fellow Aspies, diagnosed much earlier than I, are happily enjoying their tea party, content in the ways that they differ from the rest of the world. At the same time, I fear society, or the Queen of Hearts and her court, judging my differences and declaring that it must be off with my head. Like Alice and the “Eat Me”/“Drink Me” potions, I am constantly adjusting to fit my new world, not knowing what the end result will be or if I will find myself “going out altogether, like a candle.”

There are so many things I’ve never understood. What’s more, I’ve never understood exactly why I don’t understand. At least now I’m gaining some understanding about my lack of understanding. Things are very black and white for me, very logical. If you and I have a misunderstanding that leads to an argument, I feel like we should explain our positions, clear up the misunderstanding and end the argument. I don’t understand the need to keep talking about how we felt because we’ve already established that it was all just an error in communication. If I see a clear solution to a problem you have, I want you to take action and solve it, not talk about how the problem makes you feel.

This is not to say I am incapable of empathy. On the contrary, I feel enormous empathy. Perhaps too much, on occasion. My problem comes in expressing it. If you are hurting and there is no clear way to fix it, then I hurt for you. I just don’t have the capacity to give voice to that feeling. I have learned to say, “I’m sorry you’re hurting and I wish I knew how to help.” but that is rarely enough to make the point that I really, truly do care about what you’re going through.

I know I’m not the only one making adjustments and learning new things. I am accepting that this is permanent, because it is who I am. I am the Mad Aspie. Pass the hookah and pour me a cup of tea. I’m not leaving Wonderland.

About the Author: Femmeburger is a woman with Asperger’s. This piece first appeared on her blog, Femmeburger, and is reprinted here by permission.


Daniel, Me, and Empathy

by Angelique

Yesterday we were supposed to take my mom to drop her car off to be fixed. Against her better judgement she did not call to see if they were open. They were closed, on a Thursday…odd…and previously they had told her not to bother to call, “just hop on by.” We got back home and my mom was in a panic. Her plan had been derailed, she was freaking out about her car, the noise was too much for her, and it was causing her major sensory overload. I was ready for her just to leave because she couldn’t calm down and it seemed at that point the best thing for her was to go home, but Daniel grabbed her hand and told her that she had to come inside.

My mom just wanted to go home. She was very upset.

Daniel, with his charm, pulled her into the house and sat her down on the couch. He sat with her, holding her hand. My mom was still panicky and having anxiety. I just talked to her and told her how we could do it tomorrow, and that everything would be fine. And slowly you could see her become calm. Daniel, still holding her hand, was smiling at her, talking to her a little bit about his glitter globe, and looking at her. I have to share at this point that prior to my mom’s arrival, Daniel had been in a full-blown meltdown and wrestling me because his headphones would not work in his computer, and he didn’t understand my many futile attempts to fix it. It is still not fixed. I guess the drive helped a bit, and then when we got home he could tell that Grammy was very upset.

There were other factors that led to my mom’s moment.

She felt bad for feeling as if she had wasted my time and gas. She had not eaten or taken her scheduled nap that she normally takes and she was all geared up to get her car fixed. All of these factors caused her anxiety, and Daniel felt it. He then took her into one of the bedrooms to play with his toys and continued to try to comfort her; at one point, he even rubbed her back. Since she had not eaten, I got her some food and water to help her calm, and Daniel came and sat with us at the table. He ate the same thing as her and told her that he was eating it, too. While we sat there, he would look at her and smile and then go about his business. When he felt that she was calm, he got up and left, and that was that. He used several of his own coping mechanisms to try to help her.

I had not noticed Daniel displaying this type of behavior before.

But the thing is I hadn’t been looking either. I have no idea how many times Daniel has felt empathy and tried to bring comfort to others. His ways are different at times, though yesterday, he showed some pretty telling sympathetic behaviors. I wonder what other ways he has tried to show us that he is feeling us. I know that for me, I do things, like send silly pictures or start acting goofy with people when I feel something. I will give a small gift or just sit with someone. I don’t have the right words most times unless I can write them out, and I don’t do hugs well, but I can listen. I am a good listener and observer of needs. So another way that I show empathy is by paying attention to what makes people happy, such as a book, a song, a poem, or just tell them that I am thinking of them. I used to give things that I liked, at times I still do, thinking that they would enjoy it as much as me.

Daniel reminded me that I tend to compartmentalize ideals about certain things.

I guess empathy would be one that I have had a script for that I didn’t realize, or I tend to only remember my failed attempts at it. I do have successful times as well. Later in the evening, Daniel was reading a book, and he came up to me asking questions like “What is she feeling?” and “Is he sad or mad?” Something happened yesterday when he felt my mom’s emotions and was able to comfort her, because he has been asking me all day about what people are feeling and why. It made me realize that my many questions that I ask are from the heart of trying to have empathy. Elaina left this comment on my last post where I referred to myself saying that I didn’t ask questions because of empathy “I have spent time trying to understand and it has come from a place of empathy. I know you said it didn’t for you but, I wonder if you thought about it some more you might realize it did? Idk I don’t want to presume but, I think the desire to understand where others are coming from is empathetic.”

After thinking about it more and watching Daniel, I believe it is true.

I will feel a persons emotions but will not know how to comfort them or show empathy the way they need, so I start to ask questions. I have learned that what helps me does not help others. Many times my efforts have not been received well because the person felt I was being insensitive. A prime example was when my sister was getting married, and I was unable to go to the wedding. I did not call her because I felt I would be intrusive, and I knew that she had a lot going on. I did not want to bother her with a phone call while she was trying to get prepared for her big day. I later discovered that she wanted to hear my voice, she wanted to hear that I cared and that I was sorry that I was unable to make it. I didn’t understand why she was upset with me and hurt.

I now understand why she was upset.

But I only discovered that because I asked her. She was acting funny over email and saying odd things on Facebook. I didn’t understand her behavior so I asked her if she was angry with me. We talked it out, and I apologized for not contacting her. That was an example of me imagining myself in her situation; for me, I would not want a phone call. I would have been upset had she called me when I was under such stress. I have learned over the years to ask questions when I do not understand how to empathize or to comfort. I find it interesting that Daniel is connecting that way as well. Again I have learned a lesson.  I need to remember my ways of showing empathy and understand are not wrong.

And also stay attuned to others around me and their way of needing/expressing empathy.

It is also a bit interesting to me that this has come up when there are several posts that I have seen about autism and empathy, but I have not had the chance to read them. I am looking forward to see what others have to say on the topic, and hopefully gain more understanding and perspective with all of this. I am really happy to have witnessed and paid attention to how Daniel knew how to respond to my mother. I was ready for her just to go home. I don’t mean that in a bad way; I mean I really could not help her and thought the best thing for her was to go home. Daniel knew what she needed and I think I should keep in mind what he did for her, because possibly that is how he wants to be comforted many times.

Funny thing is I can totally relate. Sometimes the best way to comfort me is to just sit with me.

About the Author: Angelique is a 38-year-old wife and mother of three. She loves to write, read, and learn; and she enjoyes music, laughing as much as possible and dancing wherever she is without a thought. Her six-year-old son Daniel is on the autism spectrum and is now considered high functioning. Angelique, her husband, and their two other children all show autism traits. Daniel, Me, and Empathy appeared on her blog, Mind Retrofit, and is reprinted here by permission.


When I is Not Really Me

by Capriwim

One of the most frustrating things about Asperger Syndrome is that I find I sometimes react to certain things in a way that is quite different from what is considered the norm. This is because my brain sometimes perceives things differently from other people, and often has different values and priorities. And so there are times when I can’t understand why people are reacting the way they are, and times when people can’t understand why I am reacting the way I am.

I think it’s important to draw attention to the fact that this lack of understanding goes both ways. I find that when people on the autistic spectrum fail to understand someone’s reaction, this is seen as ‘lack of empathy’ – but, when someone who is not on the autistic spectrum fails to understand the reaction of an autistic person, this is seen as a case of ‘autistic people are a puzzle’ and a justification for representing us as a jigsaw puzzle piece. These double standards are unhelpful. They place all responsibility for lack of understanding on the autistic person, and create a divide between those who are on the spectrum and those who aren’t.

A more helpful and respectful approach would be to see autism and lack of autism as two different cultures – like, say, the German and the French – living alongside each other, and for both sides to try to educate each other about their differences and to make an effort to try to understand each other. And, most importantly, for both sides to recognise that underneath the differences, they are both human and thus have an awful lot in common, too.

This is what I attempt to do in my blog. I wish to explain what it’s like to have Asperger’s in a way that makes people think, ‘Actually, it does make sense for a person to act in such a way, if this is what is going on in their head.’ I want to lower the divide, and to be seen as a human rather than a puzzle.

In one of my posts, I mention difficulty with pronouns – the confusion of me being ‘I’ when I talk about myself, but ‘you’ when someone else talks about me. I talked about how I found this confusing as a child, but was able to understand how the pattern worked when it was explained to me. Unfortunately, grasping the correct usage of pronouns didn’t mean that pronouns caused no more problems. However, the kinds of problems they then caused were not visible to others in the way they would be if I were simply using the wrong pronoun. The new problems they caused me as a child manifested in a way that was completely incomprehensible to others.

As a child, I liked singing songs. At least, I liked all songs except one. There was one song that caused me great distress when I learnt it at five years old at school. It was the song that goes like this:

One, two, three, four, five;
Once I caught a fish alive.
Six, seven, eight, nine, ten;
Then I let it go again.
Why did I let it go?
Because it bit my finger so

There are two more lines after this, but I never heard them, because at this point, I would start screaming loudly and steadily, and stick my fingers in my ears. I didn’t want a fish to bite my finger. And ‘I’ and ‘my’ refer to me when I use those words, so this would mean that a fish had bitten my finger. I couldn’t simply not sing because the teacher had told us to sing. It was like the teacher was making a fish bite my finger. So I screamed, out of terror, because I didn’t want to sing these words, because I didn’t want a fish to bite my finger, or to have bitten my finger. I didn’t mind singing about catching a fish, because I wouldn’t mind catching a fish, but I didn’t want to sing that song.

I simply didn’t understand that the song was about a fictional ‘me,’ and that even though I was singing it, it didn’t really mean me, but it was more like telling a story about a ‘her.’ Perhaps if someone had explained this to me, I’d have been okay with singing it. But of course no one explained that to me, because it didn’t occur to anyone that this needed to be explained to me. Most people see it as quite obvious.

My teacher was quite startled when she first taught this song and I screamed. She asked me what was wrong, and whether I was hurt. I couldn’t explain what was wrong, and she got impatient and told me to stop screaming because I was spoiling it for everyone else. That was a common criticism aimed at me – I was always spoiling things for everyone else. My behaviour was unpredictable and I was generally seen as naughty – so my screaming was just seen as another instance of naughtiness and unpredictability. Teachers would mostly try to stop me screaming rather than try to get to the root of the problem.

Anyway, the teacher got us to sing the song on several occasions, and each time, I screamed. I eventually screamed that I didn’t like the song and I didn’t like the fish biting my finger. My teacher told me impatiently that it was only a song. But ‘only a song’ didn’t mean anything to me, and I started up a new batch of screaming when she introduced a new ‘fun’ song to us, entitled ‘I’m taking home a baby bumblebee.’ I’d experienced wasp stings, and the thought of singing about a bee stinging me seemed like the most awful thing ever – even worse than a fish biting my finger.

Of course, my teacher didn’t understand my reaction, and looking back, even if I’d been the most articulate child in the world, I would not have been able to explain it to her, because an explanation would require a knowledge of the fact that I didn’t understand that singing songs in the first person didn’t literally mean I was singing about myself. Had I possessed this knowledge, there would have been no problem in the first place to have to explain! So I can only explain it now in retrospect.

Also in retrospect, I know that the most useful thing for me would have been someone actually explaining to me that some songs use ‘I’ instead of ‘he’ and ‘she,’ but that this is just a story-telling custom, and that it doesn’t mean they are about me. And it would have been very handy to have been told that I didn’t have to sing if I didn’t want to.  But of course, my teacher had no way of knowing this, because I had no way of explaining my difficulty to her.

I think it is this sort of difficulty that makes people see autism as a puzzle – but it is a difficulty that can be addressed when people on the autistic spectrum are able to understand their difficulties in retrospect, with more knowledge. And then people who are not on the spectrum, once they realise that autistic people see things differently, are able to see their own assumptions from the outside – from the perspective of someone who doesn’t hold the same assumptions – and then explain them, rather than assuming they are assumptions that everyone shares. So this is a way that mutual understanding can be reached.

About the Author: Capriwim is a young woman with Asperger’s Syndrome. This piece first appeared on her blog, Aspects of Aspergers, and is reprinted here by permission.


Myth versus Reality

by Jean

I got to thinking over the last few weeks about the confusion I felt in Bob’s early days of wandering through AutieLand. Prior to his diagnosis, I researched exhaustively, desperately searching for clues that would pin a name on the bizarre collection of strange behaviours he was exhibiting.

Of course, autism made an early appearance, but I was constantly perplexed by the fact that he often just didn’t fit the pictures I was reading about. I spent 15 months on a sickening see-saw of “he has no speech (autism!) , but he has a wicked sense of humour (not autism!)”, “his eye contact is poor (autism!), but he loves cuddles (not autism!),” and so on, and so on, and so on. It nearly drove me insane with worry and uncertainty. Hey, we’ve all been there, and got the t-shirt/depression/addiction (delete as required) to prove it. Personally, I’d prefer the t-shirt, but my pickled liver and depleted serotonin levels tell another story.

It made me question the myths that surround autism, partly promoted by films like Rainman (which I love, but Bob has trouble counting 5 matchsticks, never mind 432 in an eyeblink…..he might eat them, though). But mostly, they grew out of lack of knowledge and experience.

The myths are sometimes comical, but are never helpful. So, because our kids are definitely not mythical creatures, let’s pick a small handful of fallacies to point and laugh at.

(a) Autie kids do not feel love.

Before you gallop down to the wilds of Monaghan to string me up by my perfectly manicured toes, I know this myth is a pile of poo. Of course our kids love us. Any of us who has cuddled a sick child while watching Dora for the gazillionth (yes, that’s a real number *ahem*) time, or got their ears pulled, or their face licked by a kid who just expresses love in that way, knows what it means. Maybe they can’t verbalise “I love you, mammy,” but when we tune into their language, we get what they mean.

(b) Autie kids only communicate with us to get their needs met.

Duh!!! What kid doesn’t???

(c) Autie kids have no imagination.

How many of you have been told that your child has no imagination? I visualise a virtual show of hands shooting up over the WebWaves.

Lack of imagination is considered such a strong indicator of autism that its presence is central to its diagnosis. Hmmmm. Now, I don’t doubt for a second that Bob is autistic (he’s just too damn handsome to be anything else), but I do question whether many of the accepted traits of autism are more myth than fact. Over the past few weeks, I snapped a few shots of Bob dressing up in other people’s clothes, and playing house with his sister.

Hmmmm. Imagination at work, methinks. Yet he’s still autistic.

Bob wearing my couture PJs

Bob wearing “daddy’s blue t-shirt”

Bob wearing his sister’s bunny slippers (great pins, eh?)

Dressing up is an integral part of an evolving imagination, as kids “try on” roles (echoes of empathy, anyone?) of other people, mentally as well as physically.

(d) Autie kids shun company.

Bob and his sister play pretend. Together.

(e) Autie kids have a special “gift” that compensates for their problems in other areas.

Please stop laughing. I’m being serious!

Now, of course Bob paints art deco masterpieces while performing piano concertos with his toes (when he’s not busy correcting Stephen Hawking’s Theory of Everything…give the kid a chance!), but otherwise, he’s a perfectly normal autie kid.

I know I really don’t need to spell it out, but most autie kids are not savants. Otherwise, there’d be a lot of very wealthy autie parents out there who wouldn’t need to beg, borrow, and steal services for their kids.

(f) Autie kids are painfully beautiful.

Now THAT one is true.

Our kids are as individual as the hair on our fabulously coiffed heads. They can’t be numbered in a catalogue. Just recited as poetry.

About the Author: Jean describes herself as “an ordinary mum of 3 great kids, whose life became extraordinary when my youngest son was diagnosed with autism at the age of 3.” This piece first appeared on her blog, Planet Autism, and is reprinted here by permission.


Paying Too Much Attention to Theory of Mind

by Mamafog

I’ve been thinking about how to discuss autism in a way that is more than just a list of symptoms. I would like a description that includes the seriousness of the disability but with terms that don’t indicate that having autism is a static unchanging condition.

It is common to read that people with autism have an impaired theory of mind. Rachel Cohen-Rottenberg has an interesting take on this. So does Patricia Harkins.

In the book Adapting Minds by David Butler, the author says that Simon Baron-Cohen has argued that autism is evidence for a theory of mind module. The author goes on to explain why he thinks this idea is incorrect. He makes a lot of good points.

The main point of the author’s book seems to be to discredit evolutionary psychology, and he has an issue with the idea of modularity (as it relates to the brain) in general. (Here’s an interesting evolutionary psychology primer. The blog author was nice enough to answer my question in the comments.)

David Butler writes:

An essential characteristic of modules is that they function independently of one another.  Consequently if a module is impaired or malfunctioning, highly specific forms of cognitive or behavioral deficit should result.  These deficits should be confined to the domain of the module and should not affect cognitive or behavioral performance in other domains. 

David Butler takes issue with the false-belief test that is usually used to prove a lack of ToM. He writes:

Rather than simply being an inability to understand the minds of others, autism appears instead to prevent individuals from being able to damp down the total array of irrelevant inputs to the brain.  

Thus, while autism does involve an inability to pass false-belief tests, it encompasses a wide-ranging array of cognitive and affective deficits relevant to understanding others.   The strongest confirmation of the theory of mind module hypothesis would come from a deficit that disrupted theory of mind but left all other abilities in tact.

If a theory of mind were acquired from some more general learning disabilities, rather than being embedded in a module, it would not be surprising that autistic children fail to acquire a theory of mind given their avoidance of interaction with other people and their inability to attend to complex and changing environmental stimuli. 

Here is a link by others that seem to have the same opinion. And another.

I think part of what bothers me about the idea of defining autism as a lack of aToM module is that it seems to imply that the brain is static, and that ToM is either on or off. The term mind blindness or context blindness is very similar. Why can’t we call it context nearsightedness or mind farsightedness? I realize that autism is a serious condition and that many individuals have significant disabilities. But why should we use terms and phrases that are inherently negative and not completely accurate?

I wonder if it would be more accurate to talk about joint attention instead of ToM. That is really closer to the root of the issues, and does not involve the idea of a self contained module in the brain.

In a review appearing in the October issue of Current Directions in Psychological Science, a journal of the Association for Psychological Science, University of Miami psychologists Peter Mundy and Lisa Newell summarize recent findings supporting a theory of joint attention dubbed the “attention-systems model.”

This model proposes that human social cognition is really the extraordinary result of two basic forms of attention. One type of attention, regulated by a specific set of neurons in the brain, involves paying attention to the external world and the actions of people. The second type involves paying attention to the self and is regulated by a different network of neurons.
Mundy and Newell propose that the key to human joint attention is that these two areas of the brain become interconnected throughout development and interact so we can simultaneously keep track of the direction of self and other’s attention. Interestingly, communication between brain regions, especially those implicated in initiating joint attention, is one of the main cognitive impairments of autism.

It seems to me that it is accurate to say that autism involves a deficit in processing information that leads to delays in joint attention, and the delays in joint attention lead to the symptoms we commonly associate with autism.

A description like this implies significant disability is possible. But instead of describing autism as a lack of humanity, it seems to describe how what we call autism really is a natural part of the human condition. It also offers a root cause (a deficit in processing), and the idea of developmental progression. So contained within the description are ways to help an individual with autism.

Reference: Adapting Minds, David Butler, (The MIT Press, 2006) pages 191 – 193.

Special thanks to L. for talking me through this and suggesting the perfect reading material.

About the Author: Mamafog is the mother of a four-year-old girl with autism. This piece first appeared on her blog, Out of the Fog, and is reprinted here by permission.