Autism and Empathy
by Devon Alley, autismandempathy.comJune 9th
Voices of parent
In these snippets from the archives, I contemplate and challenge the common belief that autistic people lack empathy, since I see so much evidence contrary to this idea in my own daughter’s behaviors. I also react to the film I Am Sam.
June 9th, 2004:
I think I just traumatized my daughter by reading The Lorax by Dr. Seuss to her for the first time. When we got to the part where the last truffula tree is chopped down, she began to whimper, and by the time the Lorax lifted himself away, she was *really* crying. And there was no consoling her. “The Lorax is gone, oh no,” she kept crying. She didn’t want to go to bed. It really, really upset her. And I felt *horrible*.
So, what I’m basically saying, is that y’all need to start planting truffula trees, like, *now*. So that the Lorax will come back, and my little starfish princess will no longer be sad.
June 17th, 2004:
Watched I Am Sam last night.
Every once in a while I find myself buying the soundtrack to a movie *long* before I ever actually see it, and that was the case with this film. Found it for $5 at a used CD shop in my old hometown, one of those little random purchases I’m so famous for. Loved it, because, well, it’s all covers of Beatles’ songs. How can you not? (Unless, of course, you’re an Elvis Man…)
But, the movie. Why have I not seen this movie before now? Well, obviously because I *needed* to see it *now*. But it’s plucked out my heart and placed it on a silver tray and shoved my brains so violently back into my head that my skull is still vibrating from the impact.
So. Let me explain why. Because, as most of you know, I don’t usually watch movies of my own volition, and when I do, the ones that deeply effect me are foreign films or bizarre old films or crazy dream-like films or children’s films. Why has something so box-office-worthy sent such a dramatic earthquake into my foundations?
When I was a child, I was obsessed with the Beatles. I mean *obsessed*. I tend to fixate on certain obsessions at different points in my life, and from about the ages of eight to eleven, the Beatles were one of my main ones. I watched every single movie, I saved up allowance money to buy albums, I had posters and pictures, I read every single book in every single library I came across on them. By the age of ten, I could easily tell you all of the various “hidden” messages that were meant to “reveal” that Paul was dead — from wearing the black rose in the insert to The Magical Mystery Tour, to the Shakespearian death scene at the end of “I Am The Walrus,” to the fact that Paul is barefoot (like a corpse) when crossing the street on the Abbey Road cover. I played “Revolution 9″ backwards on my turntable to hear “Turn me on dead man,” and I played the gibberish between “Blackbird” and “Piggies” backward in the same fashion to hear “Paul is dead, miss him miss him miss him.” At *ten years old*. *Completely* obsessed.
So, you have a main character who speaks in bizarre, echolalic metaphors like my daughter, and those metaphors happen to deal with a subject that I was once incredibly obsessed with.
And the fact that, I got it. Without even trying, I got it. The way Sam is portrayed to think and react to the world is very much the way A. thinks and reacts to the world, with these subsets of skills and learning she’s incredibly focused and highly advanced at (one of her preschool teachers stopped me today and said, “I didn’t know A. could read!” and I smiled and nodded, and she added “Big words! Like ‘coral reef’! That’s amazing for a four-year-old!” and I keep smiling and nodding.) But also, not being able to grasp the Way Things Work In The World. To *have* to have things organized in order for them to make sense. When Sam goes to eat at a different place other than IHOP, that’s *exactly* a more verbalized version of the kind of fits my daughter throws whenever her routine is screwed up.
Also, the whole empathy thing. I’m beginning to think that this whole “autistic children have a problem with empathy” drivel is a whole bunch of absolute crap. My daughter has a difficult time understand social cues, that is very true, and often she’d rather just ignore you than to try to figure out the rules, and that is also true. But, she *wants* people to be happy. People crying upset her. And when she’s around a gathering of adults where I seem to feel comfortable, she’ll just randomly hug people and crawl into strangers’ laps. If I want to punish her for something, all I have to say is, “you’re making me very sad right now,” and A. gets *so* upset. *My* theory (when it comes to my daughter, at least) is that autistic children are *highly* empathetic, perhaps so much so that they *have* to shut the rest of the world out in order to not be driven crazy by it.
But… ack, I have three minutes left to lunch. Basically, the movie simply amplified my already-existing feelings of “I don’t want to change my daughter — I want to change the rest of the world.” I mean, she’s *beautiful*. She’s bizarre and she talks to herself and god knows if I’ll ever manage to get her to call a viewfinder a “viewfinder” instead of “mosquito population” (because she first saw a viewfinder on Lilo and Stitch), but… this is who she *is*. This is what makes her beautiful and unique and bizarre and changeling-like. Her world, the place she lives in her head — from the glimpses I get of it, it makes a hell of a lot more sense to me than this crazy fast-paced don’t-pay-attention-to-detail, just-get-the-job-done world we live in now. Where talking to strangers is wrong and hugging people is wrong and asking the world if they’ve seen your imaginary friend is just bizarre. But these are the things I *love* about my daughter. Is it hard — hell yes, it’s hard — the same way it’s hard for Lucy to have Sam as a father. But, she never would give that up, not for anything, not for a million perfectly normal lives. And neither would I.
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.
Voices of autisticsI think most of the research into social skills is screwy. The reason? It all assumes you’re interacting with a neurotypical (NT) person. Therefore, ‘good social skills’ refers to good understanding of NTs, while ‘poor social skills’ refers to poor understanding of NTs.
Imagine if we defined ‘good language skills’ as ‘speaking English well’. A celebrated Swedish author, who writes compelling and interesting books but whose English is very poor, would be considered to have poor language skills. I hope everyone can see the problem with that. The same problem arises when we describe ‘good social skills’ in terms of ability to relate well to NTs.
I think there are two distinct sets of social skills. One is the ability to ‘put yourself in another person’s shoes’ and imagine how you’d feel in their situation, and use that to decide how to treat them. This works well if the person you’re interacting with is similar to you, not so well if they’re quite different from you. Most NTs use this set of skills quite heavily, because most people they meet are similar enough for it to apply fairly well.
The second set of skills is the ability to set aside your own perspective and pay attention to the other person, to figure out what they’re thinking and feeling by observation. This is more laborious and inconvenient, but it works with anyone, no matter how much they differ from you. Most NTs seldom get a chance to learn these skills, unless they travel to another culture, form a close bond with an animal (merely having a pet doesn’t necessarily count), or befriend someone with a developmental disability.
For autistics, and for many other people described as having ’poor social skills’, what’s actually going on is quite different. They are different enough from most NTs that ‘putting themselves in other people’s shoes’ frequently leads to the wrong response – such as a 10 year old regaling his classmates with facts about cockroach biology on the assumption that they’ll find it just as fascinating as he does. With time and effort, they learn to stop putting themselves in other people’s shoes, and instead use the second, harder set of social skills a lot.
I think both sets of skills are important. Being able to put yourself in someone else’s shoes, when appropriate, results in a far deeper experience of empathy for that person, and gives you a very rich knowledge base to interact with them. And though it’s easier than the second set of skills, it does take a certain degree of self-understanding to be able to match up someone else’s experience to your own and figure out what would have been helpful to you in that situation.
And the second set of skills is important in understanding diversity, in seeing the rich variety of experience for what it is. It’s also, I think, important for social scientists, who use similar strategies even when dealing with their own ‘kind’ of people. And it’s important because even NTs can’t always avoid interacting with people who are different from them. You may find that circumstances throw you unexpectedly into a situation of bridging difference, such as when a new mother is told that her child has a developmental disability.
Atypical kids often learn the second set but not the first set. This means that they learn to see interaction in general as difficult and confusing. It also means that they have more trouble developing self-understanding, because they don’t get to form links between their own experience and what they see in others. Alexithymia, the inability to name or identify your own emotions, is commonly associated with autism. I suspect most kids learn to label emotions by having adults correctly recognize and label their own emotions as they’re feeling them (which is harder when the adults are struggling to bridge a difference between themselves and the child), and by empathizing with others while hearing people label the others’ emotions (which is harder when you wouldn’t feel that way in that situation). Spending time with people who are ‘like you’ is very important to understanding yourself.
Which brings me to the topic of integration vs segregation. Atypical kids, in order to succeed in life, need to learn skills for relating to NTs. And segregation is often used as a way to deny a proper education and enable discriminatory practices – no ‘proper people’ see it who aren’t participating in it, and the children don’t see counter-examples to make them question it. But on the other hand, segregated spaces are important, since they allow atypical people to connect with others who are more similar to them. The solution, I think, is to allow opportunities for both integration and segregation, and to make sure the segregated spaces are voluntary and positive (and preferably organized by the same kind of people who participate in that setting, like Autreat).
Neurotypical people often miss out on learning the second set of skills. Being the majority group, this only causes problems under special circumstances, but it does mean missing out on some of the richness of human diversity. And it can be a serious problem for atypical people, dealing with a society where almost no one knows how to relate to them. Furthermore, as I noted before, NTs can’t always tell when they’ll be thrust into a situation requiring the ability to understand someone very different from themselves.
And here is one of the best arguments for integration – when it’s done well, it gives NT children an opportunity to get to know someone different from most people, and to develop the skills to understand them. That is, when it’s done well. Many times, atypical kids in typical settings are rejected. No one tries to understand them or see their point of view. Instead, they learn that in order to be accepted by the people who matter, they must distance themselves from anyone who doesn’t fit in. I don’t think my classmates in any of my classes learnt anything valuable about relating to autistic kids from knowing me, for example.
Other opportunities are cross-cultural encounters such as exchange programs or simply having immigrants in their social group. Being an immigrant, of course, is a potent way to learn about difference – I remember reading about a father of a high-functioning autistic boy who gained a better understanding of his son after they moved from US to England and he started running into social misunderstandings. Having pets can also be a good experience, but only if you approach your relationship to them with the understanding that they have their own, rich, nonhuman experience of the world. If you anthropomorphize them or else treat them like objects that happen to move around on their own, you won’t gain much in the way of understanding differences.
About the Author: Ettina is a young autistic woman who works to make our society more accepting of diversity. This piece first appeared on her blog, Abnormaldiversity, and is reprinted here by permission.
Voices of autisticsWe in the disability community knew it was coming. We’d known it for days.
After a young man in Aurora, Colorado took the lives of 12 people, wounded 58, and left nothing but grief and misery behind him, we knew they’d start rounding up the usual suspects. They always do.
And they did — on the television, in the newspapers, and on the Internet. Pundits, reporters, and ordinary people all decided one thing: He must have been mentally ill. After all, how could a sane person do such a thing?
It’s as though utterly ordinary people don’t do atrocious, violent, unthinkable things every day of the week. I sometimes wonder whether people in this country are aware of the sheer level of violence that goes on all over the world, every minute of every day, perpetrated by folks who are neither mentally ill nor delusional. And I sometimes wonder why the message hasn’t gotten through that most mentally ill or delusional people never harm anyone — except perhaps themselves.
And then I remember: Oh yeah. People love a scapegoat. So, hey, they figure, let’s go after some of the most vulnerable, stigmatized people out there. Let’s choose people who are the victims of crime far, far more often than they are the perpetrators. Let’s choose people on the margins, without a lot of power. Let’s choose people who have already been kicked to the gutter. Yeah. Let’s do that. The hell with them. They’re not worth much anyway.
And, by all means, let’s ignore the fact that most of the people who commit these crimes have two things in common: they are young and they are men. God forbid that we should ask ourselves, What are we doing to our young men that makes them do such things? What are we teaching them? What are we not teaching them? No. It has to be someone else — that crazy person over there. Not my son. Not my neighbor. Not someone I might chat with on my front porch. Someone else. Someone other.
I saw it beginning to happen. And then there was more. I saw people in You Tube videos and in the comments on news sites opining that the shooter must have been autistic — as though that would explain it. It was disturbing to read, but I thought, You know, Rachel, you can’t get upset with every ignorant person with an Internet connection and a YouTube account. Don’t give them your energy. I figured that the folks whose words I was reading didn’t have that much reach, and I comforted myself in the knowledge that people were speaking up and countering the ignorance with information. It was an uneasy kind of comfort, but it was comfort nonetheless.
And then I woke up this morning, and I read what had come out of Joe Scarborough’s mouth. On Morning Joe, an MSNBC program with an audience of millions of viewers, Joe decided that it was time to join the He Must Be Autistic chorus. According to an article on Politico.com:
“You don’t want to generalize,” MSNBC’s Joe Scarborough said today before saying that James Holmes, the suspected Aurora, Colo., shooter, was “on the autism scale.”
“As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale,” said Scarborough, whose son has Asperger’s syndrome. “I don’t know if that’s the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected.”
Whenever I hear the phrase You don’t want to generalize, I brace for impact, because I know that what’s about to come next is a disaster. In this case, the disaster was, as my kid would say, epic. The disaster consisted of two bombshells falling to earth, one right after another, and blowing to smithereens the hard work of autism advocacy carried out by thousands of autistic people, autism parents, and autism professionals.
First, there is the absolutely false idea that people who commit mass murder are on the autism spectrum. According to Joe, it happens more often than not. What? Where’s the evidence? Oh, right. There isn’t any. Because it’s not true. There has never been any evidence what-so-fucking-ever that autism is associated with criminal violence. It makes me feel sick to even have to counter this nonsense, but I have to, because now, millions of people are going to believe it.
And then, there’s the image of autistic people who can “walk around in society” looking like everyone else, putting together respectable GPAs, and seeming so utterly, utterly ordinary, until one day — well, you know. I’d like to take this moment to thank Joe for representing autistic people, in the popular mind, as ticking time bombs. Well done, Joe! I’m sure the next ethical, talented, gentle autistic young man who doesn’t get a job because the hiring manager thinks he might be the next office shooter will thank you. Maybe he’ll even name his kid after you. And what about the shy kid with Asperger’s who already has difficulty making friends? What will happen to him with such falsehoods circulating in the world he inhabits? And what of older autistic people, heading into their elder years facing exclusion and ignorance? What about them?
I wonder sometimes. Do people like Joe Scarborough know what it means to be that stigmatized? Do they have any idea of the fear it engenders in people? Do they have any idea of how it tears at the heart?
I don’t know. But I do know this: We can’t let such things go without protest. So please, let Joe Scarborough and the folks at MSNBC know how you feel by leaving your comments at the Morning Joe feedback page. And remember to sign my online petition asking Joe Scarborough and MSNBC to issue a full retraction of Joe’s remarks.
Please add your voice to the outcry. Thank you.
© 2012 by Rachel Cohen-Rottenberg
This post first appeared on Disability and Representation: Changing the Cultural Conversation on Monday, July 23, 2012.
Voices of parents
The family was on our way home from Maine. We’d wolfed down our very last lobster rolls at Captain Hook’s – our traditional first and last stop on the way in and out of town. I’d memorized the images of Brooke laughing in the pool, proving to myself that I hadn’t invented those perfect moments in my head. I’d sulked and brooded quietly. I’d in some way, shape or form snapped at everyone who dared to breathe in my general direction. I’d even asked poor Katie to please stop talking for a while and give Mama a little break. Yep, pretty much had it covered.
As we turned onto the highway, I looked back at Brooke in her seat. She hadn’t said a word or made so much as a stimmy vocal peep since we’d gotten into the car. She was but a phantom in the seat behind mine.
She was slumped over. Her arms were stretched forward toward her feet and she was staring vacantly ahead. There was something in her posture – a heaviness, a sadness – that I’d never seen before. She wasn’t tense, but she looked weighted down, almost as if she were melting into her seat, into herself. Seeeing her like that was just awful.
Out of nowhere, she very quietly announced that she needed a band-aid for a scrape on her knee. I sprung into action. ACTION! Something I could DO. I unbuckled my seat belt and climbed feverishly into the back seat with the girls. I would have used any excuse to get there eventually, but this one was terrifically convenient.
I rifled through the dop kit in the ‘way back’ and found our ever-present stash of Hello Kitty band-aids. I placed not one, but three of them on various scrapes and cuts on Brooke’s legs and then I settled into the back seat next to her, tucked between my girls.
Brooke resumed her original posture. I stroked her back lightly, gingerly. I didn’t trust my touch. Might it soothe or burn her skin? I had no idea.
She answered the question by jerking away, turtling further into the corner of her seat. I had no where to go. I leaned into her slowly. As quietly and softly as I possibly could I whispered, “I’m here, baby. Anything you need, Mama’s here. I love you so much. When you need something, you just tell me, OK?” She didn’t balk until, without thinking, I touched her hair.
“Don’t touchmepleaseMama!’ she spit out. She was tense, upset. “You would go there please!’ she said. Her voice was strained and anxious. She pointed an outstretched arm to the front of the car.
I kissed Katie on the head and climbed back into the front seat, thouroughly dejected. “I feel like an ugly drunk guy in a bar who can’t stop hitting on every pretty girl who walks in,” I told Luau. “I can’t take the constant rejection. She just keeps swatting me away.”
I fought back tears all the way to the New Hampshire border. Knowing, understanding, rationalizing, don’t always mean feeling. I KNEW what she needed. I UNDERSTOOD that she had been able to use the language to tell me. I FELT hurt.
Katie requested a pit stop. Luau pulled into the first one we saw. He and Brooke stayed in the car while Katie and I made our way in. When we came back to the car, I opened the door for her to let her in. Brooke looked exactly as she had when we left, but she looked over at me as I opened the door. “I love you, angel,” I said softly.
“Love you, Mom,” she responded in a whisper. I reached across the seat and laid my hand out on it, just a few inches from hers. She reached out with one little finger and touched my hand. “Baby?” I began – tentative, insecure.
“Yes, Mama,” she said – practiced, rote.
“Would you like me to come sit with you?”
Like the drunk in the bar, I just couldn’t leave well enough alone. But I saw something. An invitation in the little finger on my hand.
“Yes, Mama” came the quiet response.
I climbed in, feeling as though I’d just won the lottery, but with no idea of how to spend my winnings. I reached over Katie to close the door and nodded to Luau – ‘the troops are all set’.
I sat like the Tin Man between the girls. I was desperately afraid to touch Brooke. It’s second nature – reaching for my girls, stroking them, touching them, holding them. But I fought with every fiber of my being. I couldn’t take it again. I just couldn’t. So I sat with my right arm tight to my side, hand in my lap.
We rode that way for a while. Katie periodically showed me funny passages from her book and we shared a few odd moments of much needed comic relief. But I never lost sight of my parameters. The lines I wouldn’t cross.
And then suddenly, THWACK! The billiard balls collided with all the force of a tsunami.
Out of the clear blue, Brooke grabbed my arm as though her life depended on it. It was nearly violent in its sheer force. She’s tiny, but she almost knocked me over as she yanked my arm away from my body. She suddenly and quickly wrapped herself around my arm and tucked her head down into the crook of my shoulder.
I couldn’t breathe. I turned to her, still afraid to move, unsure of how to respond. She was looking RIGHT AT ME. Dead on, straight into my eyes with an intensity I just couldn’t place and would never dare to name.
The tears came and I was powerless to stop them. The dam had held for three days; it wasn’t going to hold for a moment longer.
Brooke’s expression didn’t change, but she looked at me even more intently than she had before I’d begun to cry. She took one little hand and put it all the way around my back. It snuck just under the top of my dress and settled on my back. She was cradling me. It was nearly too much – too sweet – to handle.
The strap of my dress had fallen off of my shoulder. I hadn’t noticed. With tiny little fingers, Brooke delicately picked it up and gently placed it back. I can’t possibly describe the tenderness of that moment. I will never have those words. The lightness of her touch was like an angel on my skin. She had never, ever done anything like that before. I don’t know if I knew that until that moment. Grateful, overwhelmed tears poured down my cheeks.
Katie looked over. “It’s OK, Mama,” she said, and she laid her head on my other arm. Even though I was crying in front of my children, I still wanted to freeze the moment in time – live in it, relish it, cherish it. I wanted to put it in a delicate porcelain box and keep it next to my bed. Brooke leaned forward and craned her head around to get a better look at my face. Her brow furrowed ever so slightly – a perfect approximation of her sister’s go-to expression.
She reached forward and took a child’s board book from the seat-back in front of her. She grabbed my face and turned it toward her. She ran the book along my cheek. “It would make the yucky go out of your eyes,” she said. It hurt like hell – a cardboard book dragged across a sunburned cheek – but it was the sweetest thing she’d ever done.
She looked unsatisfied. She tried a little finger right IN my eye instead, but that didn’t seem to do the job either. I sat in stunned silence, submitting completely to this doting little creature who was introducing herself to me.
She lifted Boots the Monkey out of her lap, where he’d been buckled in along with her. She used his ‘hair’ to dry my tears. I snapped out of my reverie long enough to help her dry my face. This finally did it. She seemed satisfied that the ‘yuckies’ were gone.
She sat back and squeezed my arm again. One little hand crept behind my back again and under my dress and her head settled back onto my shoulder.
Katie continued to read. Luau continued to drive. And Mama nearly drowned in gratitude.
All images are the exclusive property of Diary of a Mom 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 Jess at Diary of a Mom.
© 2008 – 2012 Diary of a Mom.
About the Author: Jess can be found on Twitter @diaryofamom and on her blog, Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters — eleven- year-old Katie*, an utterly fabulous typically a-typical rising sixth grader, and nine- year-old Brooke*, a loving, talented, hilarious rising fourth grader who has autism.
She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit ‘Like’ and probably now wonder what they got themselves into.
This piece first appeared on Jess’ blog and is reprinted here with permission.
Voices of parents
A completely gratuitous shot of my girls from a really long time ago just because
Tuesday, July 10th
Dinner’s wrapping up. Well, mostly. Brooke has apparently decided that she’s done. We know this because she’s done the fake burp which she now uses to convey the fact. Unexpected, perhaps, but pretty damned funny, especially given that it’s not really a burp as much as a croak.
She runs from the table into the den without another word.
“Excuse me, young lady,” I say to her back. “What are we forgetting please?”
She comes running back to the table. I never cease to be amazed by just how much this child runs. Someday I’m going to put a pedometer on her. I’m guessing a marathon a day.
She puts one cheek back in her chair and cocks her head toward me. Sort of. “Meeeeeeeee I be excused please? Cause I’m all full. *Burp*”
I smile at her and say that she may.
Before I know what’s happened, she’s crawled up and over me and is sitting on my lap. Her long, lean legs hang over the sides of my chair. She is straddling me and we are facing one another. Taking advantage of the proximity, I deposit a kiss on her nose. She grins.
She reaches for both of my hands and laces her fingers through each of them. I will never take this for granted. She holds my hands up on either side of my head, just below my ears, and begins to sway us side to side. And then she sings.
When the stars burst
The moon says, Hi
And the sun says, Bye
And everything is OK
When the stars burst
Up in the sky
Then it’s nighttime
And you have to go to sleeeeeep.
We are intertwined – a messy tangle of hands, legs, eyes. God, those big brown eyes. Locked onto mine. The second time in a matter of days. We’re so close I can smell the spaghetti on her breath. The moment is so sweet, so intense, I nearly lose it. As soon as she finishes the song, she tells me that it’s my turn to sing it to her. I happily oblige, adding my own little twist.
When the stars burst
The moon says, Hi, Brooke
And the sun says Good night, Brooke
And everything is OK
When the stars burst
Up in the sky
Then it’s nighttime
And you have to go to sleeeeeep.
This goes on for so long that I finally scoop her up in my arms and move us both to the comfy chair in the den. For what has to be a solid fifteen minutes – a lifetime in our world, we interact this way. Alternating singing to one another, changing the words ever so slightly each time. Hands clasped, inches apart.
Eventually we stop singing and she leads me into a series of scripts. I follow happily as she makes her way through Rock, Paper, Scissors, Shoot! to Ugly Pear Lop Ala Kazool and then a hard right into the Land of the Knock Knock Jokes. “Knock knock,” she says. “Who’s there?” I answer. “Pooch,” she says. “Pooch who?” I ask. “Pooch your arms around me, baby!” she says as we roll into a hug on the chair. Her giggle melts into my hair. I will follow her as long as she will have me.
The moment is divine.
Wednesday, July 11th
It’s getting late. Brooke should already be in bed, but we’re still puttering around getting things ready for tomorrow. No one’s in a panic. It’s summertime, after all.
I reach into Brooke’s drawer to grab a pair of shorts and find one of Katie’s favorite pairs tucked in there by mistake. I grab them and head off to Katie’s room to put them where they belong.
Ten minutes later, Katie’s door creaks open. Luau looks down and finds me on the floor in front of her dresser. I’m holding the shorts, laid across the top of the open drawer where they belong. I am sobbing.
I miss my girl so much that it’s physical. I feel like I left not just my heart at that camp, but my left arm along with it. I’m OK – sort of – until I come in here. Here, in her room, where she isn’t, I don’t have a prayer.
I know I should have run in, dropped the shorts and run out. But I wasn’t strong enough. And here I am, as Katie would say, a big ole blob of Mama mush on her floor.
Brooke appears in the door behind Luau. I know I should do something. Say something. Be stronger than I am. There’s no time to process what I should be doing or how I should do it.
In one fluid moment, Brooke crosses the room, straddles my lap and grabs my hands. Before I can think about what’s happening, we are swaying. And she is singing.
When the stars burst
The moon says, Hi
And the sun says, Bye
And everything is OK
And you feel better now because the stars burst
And it’s nighttime
And you’re all done crying
And the stars burst
Up in the sky
And then everything is OK now
And you have to go to sleeeeeep.
She has the voice of an angel.
The moment is so sweet that it aches.
Those of us considered neuro-typical – what do we do in that situation? We wait. We watch. We look for clues. We assess. We ask inane questions. “Are you ok?” (Obviously not, no.) We dance around each other. “Is there anything I can do?” (A tissue, I suppose.) We wait for our cue to enter from stage right. Maybe she needs a moment. When she stops crying, I’ll go talk to her.
Brooke does not.
She doesn’t stop to process, to wonder, to hem, to haw, to ask, “Is this the right thing to do?” She isn’t hampered by convention nor bullsht social construct. She saw her Mama hurting and she reacted in the best way that she knew how. She came to tell me that everything was OK.
And in that moment, it was far, far better than OK.
All images are the exclusive property of Diary of a Mom 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 Jess at Diary of a Mom.
© 2008 – 2012 Diary of a Mom.
About the Author: Jess can be found on Twitter @diaryofamom and on her blog, Diary of a Mom where she writes about life with her husband Luau* and their beautiful daughters — eleven- year-old Katie*, an utterly fabulous typically a-typical rising sixth grader, and nine- year-old Brooke*, a loving, talented, hilarious rising fourth grader who has autism.
She also runs the Diary of a Mom Facebook page, a warm and supportive community of parents, friends, adults on the autism spectrum and some random people in her life who cared enough to hit ‘Like’ and probably now wonder what they got themselves into.
This piece first appeared on Jess’ blog and is reprinted here with permission.
Voices of parents
I still remember the conversation with one of my son’s preschool teachers like it was yesterday. “We’re concerned that your son doesn’t show empathy in his interactions with other kids.” This was three years before his Asperger’s diagnosis, and it was just one of many concerns voiced by his teachers during that difficult first year of preschool.
The research and literature on autism and Asperger’s Syndrome is rife with references to empathy. The traditional view has been that individuals on the spectrum lack empathy – the ability to understand and share the feelings of another. However, in the past few years, this view has been increasingly challenged. In 2009, a study conducted by Henry and Kamila Markram of the Brain Mind Institute in Lausanne, Switzerland, suggested that not only do individuals on the autism spectrum have empathy, but they actually feel others’ emotions too intensely to cope. Kamila Markram states, ”There are those who say autistic people don’t feel enough. We’re saying exactly the opposite: they feel too much.”
The Markrams are also the co-originators of the Intense World theory of autism, which proposes that the autistic brain is characterized by hyper-reactivity and hyper-plasticity of neurons. This is thought to lead to greatly enhanced perception, attention, and memory, which may lie at the heart of most autistic symptoms. Their theory suggests that the fundamental problem in autism spectrum disorders is not a social and empathetic deficiency, but rather a hypersensitivity to experience, which includes an overwhelming fear response.
What does this mean to parents of children with Asperger’s Syndrome?
It can mean a major shift in how you support your child. Your focus to date may have been on helping your child develop empathy – teaching him or her how to better understand and respond to the feelings of others. If the Intense World theory is correct, attempting to teach your child empathy may only bring limited success – your child is already an empathetic individual, and what he really needs is support coping with his intense emotions so he can express empathy more appropriately.
How can this new understanding be applied to help kids with Asperger’s?
If the Intense World theory resonates with you, and you think it accurately describes your child’s reality, consider the following approaches:
- comfort or calm your child the next time he is in a situation where empathy is the appropriate response (e.g. another child has been hurt) - if necessary, prompt him for the “right” response after he is calm
- focus on addressing your child’s underlying emotions or fears that interfere with the appropriate expression of empathy
- do not punish your child for inappropriate responses or failure to show empathy, as this may increase the stress or fear your child associates with these types of situations
- manage the amount of stimulation in your child’s environment (both from other people and various sensory input) so that he has sufficient down-time where his brain is not in “hyper-reactive” mode
The gist of the Intense World theory is that the autistic brain must be calmed down, learning must be slowed, and cognitive functions must be diminished in order for the autistic individual to deal effectively with life and other people – including the expression of empathy. In other words, autistics are too high-functioning in some respects and this is what causes their challenges. It’s definitely a paradigm shift!
I asked my son, who has Asperger’s Syndrome, why he sometimes reacts the way he does when someone else gets hurt. His answer seems to support the Intense World theory - he said “Sometimes the pain in my heart is so strong, that it comes out as anger against the person who got hurt.” He has made a lot of progress in expressing empathy appropriately, but a stronger emphasis on helping him deal with the intensity of his emotions may just be the key to helping him master this important skill.
Does your child struggle with empathy? What have you found helpful? Share your thoughts in the comments!
About the Author: Julie Fischer is the mother of two children, the elder of whom has Asperger’s Syndrome. This piece first appeared on her blog, The Aspergersphere: Solutions for Parents of Kids with Asperger Syndrome, and is reprinted by permission.
Voices of parentsAbout the Author: Ian Firestone is the father of a nine-year-old boy with Asperger’s Syndrome. This video first appeared on his You Tube channel is reproduced here by permission.
Voices of autistics, Voices of parentsThis last weekend has been a really tough one for our family. We had to have our dog of nearly twelve years, Panda, put down last Saturday.
To make matters worse, nobody was expecting it. One day, she was “chirpy” and seemed to be in perfectly good health, and the next she was gone. She was in our family for longer than our kids, and she has left a huge hole in our family heart.
I was going to talk about emotional reciprocity today anyway, but last weekend’s events have put a whole new spin on things.
Dealing with Strong Emotions
We all deal with strong emotions, such as love, anger, and grief, in our own ways. My wife tends to cry things out, but I often internalise them and take them on board as stress and, at times, self-harmful behaviour. In the kids, these emotions can manifest as meltdowns or as general destructive behaviour. But sometimes, there’s nothing to see on the surface at all.
The point is that although we each feel these emotions and we feel them at similar strengths, our reactions vary widely both in intensity and visibility.
Quantifying Emotions
For some reason, our society seems to think that it’s okay to quantify emotions based on visible reactions. In my experience, if an event occurs to two people, and the woman is crying while the man is not, then the woman needs the most care and attention because “she’s the one who is really hurt.” The solution is to talk in a quiet voice, and bring lots of cups of tea and chocolates.
The man, by contrast isn’t bawling his eyes out, so he’s obviously not hurt. There’s nothing that you need to do for him. There’s no need to tread lightly because “he’s not even upset.”
In fact, if the event is of an appropriate level — for example the death of a loved one — then anyone not outwardly grieving is “fair game.” You can take things out on them, and you’re more or less expected to say “What’s wrong with you, man?” The words “you don’t care” should also be used in conversation to him.
Sound familiar?
It’s something that many neurotypicals do, and yet so few realise how wrong it is.
Pain on the Spectrum
What if I said that this wasn’t really about men and women? It’s about everyone in general and people on the spectrum in particular.
We use our own perception of other people’s emotions to determine our response.
Too often, I hear of neurotypical partners describing the husbands as uncaring, unemotional, and cold. Autism research alleges that people on the spectrum sometimes feel less physical pain than others (based on their reactions), and even children on the spectrum are sometimes considered to have a disconnection to the pain of others.
What if all of the reasearchers are just reading the signs wrong?
There’s strong evidence in the online community that this is exactly the case. People with autism and Asperger’s Syndrome can lack facial expression and tone, but don’t lack emotions. In fact, we are very empathetic beings — sometimes even more empathetic that neurotypicals in terms of what we feel. Our problems are with the interpretation and the display of outward signs.
One Last Example
The day after the Panda died, there was a conversation right in front of me about how useless I am at doing “manly things” around the house. It’s true. I really am useless at fixing things around the house. I didn’t react badly, and I wasn’t obviously sad, so there was no need for anyone to hold back.
It was hard to keep suicidal thoughts out of my head for the rest of the day, because that’s how I deal with pain. Fortunately, I know that I’m needed in my family and I know that depression is part of Asperger’s. I can reject those dark feelings because I know they’re part of the condition.
It’s a good lesson to friends, parents, and spouses everywhere. Maybe your child or husband doesn’t display a lot of emotion (that you can detect) but everything you say is being noted. If you know that there is good cause for emotion, there’s no reason to assume that simply because you personally can’t detect it, it isn’t there.
Treat everyone in a possible emotional state carefully and you’ll reduce the likelihood of a meltdown.
About the Author: Gavin Bollard is an adult with Asperger’s and the father of two Aspie sons. This piece originally appeared on his blog, Life with Asperger’s, on June 20, 2011 and is reprinted here by permission.
Voices of parentsI lost a close friendship after my four year old son, Charlie, was diagnosed with Asperger’s Syndrome. Our children had been in the same preschool class together until mine was asked to leave due to growing behavioral problems.
When, after nearly a year of struggle, we finally received his diagnosis, I shared it with my friend.
Asperger’s, I said. At the time, this new word was still bitter in my mouth, and every time I heard myself say it out loud, it felt like a punch to my chest. It took my air for a second or two.
But why? she responded. I don’t see it.
I wasn’t ready yet. I had no words. I stumbled through a string of reasons I did not yet fully understand myself. He has trouble transitioning, he doesn’t get social cues, he can’t see other people’s perspectives…..
That sounds like every four year old I know, she responded. Maybe my daughter has Asperger’s, too.
Yeah, they are all like that, but, it’s just that he’s …well….more….
It sounded weak because that’s how I felt. Weak and alone and afraid, and I needed so much from her in that moment. I just didn’t know what yet. So I let our friendship drift apart.
She was right, though. The hitting, shoving, and biting other kids that my three year old was doing at preschool, was in many ways typical behavior for that age. Though he did it much more often than any of the other kids, that was not the entire story of why it is not the same.
Here is the difference. All children will act out in some way as they learn about the world. But a typically developing child will see the reactions that other kids, teachers, or parents have to these behaviors and learn connections of cause and effect. This doesn’t mean they will never do them again, but they are learning to trust their instincts about people and how they can be expected to behave. But autism, for my son, means he does not see these reactions, so he does not learn from this relationship of social cause and effect. To him, people’s angry reactions and subsequent punishments come completely out of the blue and end up giving him all the more reason to think he needs to fight to defend himself from a confusing and unpredictable world.
There are several reasons why he doesn’t see these reactions. He does not recognize facial expressions. So the parental ‘look’ we are all so used to doing means nothing to him. He simply doesn’t see it. He cannot hear the emotional tone in voices, so while a sweet, gentle voice is a preferable sound to him, it implies no different meaning than does an angry, stern tone. Finally, he does not understand that the way he views the world in any given moment is not the same as the way everyone around him sees it. So, if he thinks throwing a toy at someone is funny, then he has no reason to believe that another child would see it any differently. By the way, this understanding that everyone has their own unique thoughts and feeling is called theory of mind, and some will say it means that people with autism lack empathy. Please, please know that it has nothing to do with empathy. That is a misconception that is so very hurtful to people on the spectrum and those of us who love them.
At one point, after I had read all the books and thought I understood, at least intellectually, what everything I just explained meant, there was a moment with my son that finally brought me true clarity. I think it may have been the first time, in fact, that I really saw him and understood what a struggle life must be for him.
We were at a park with his twin brother Tommy and Tommy’s wild, raucous friend Kyle. Tommy and Kyle were running around, screaming, chasing eac
I originally blogged this story back in April, but recently, I found a photograph, and felt I needed to go back and add it in here. It is so interesting to see how life unfolds. This picture foreshadows so much. I love that Marsha is on my shoulders. I love the look on my young face. I love my life as it has unfolded, and I love my disabled family. For some reason I have got it in my head that I want to go back and write about my life experiences encountering disability. I do not know what I am looking for or where these reflections will take me. I wonder. How did I come to view disability and the disabled community like I did, like I do? What lead me all the way up to my sons? The only place to start is the beginning, and that would have to be with Marsha.When I was a small child, the same age as my boys are now, my Mother taught adults with a variety of disabilities. I remember being at the school house, and it was very much like an old fashion house or church, with double doors on the front porch painted in light blue (my duo, obsessed with doors, would appreciate that detail). Incidentally, this was 30 or so years ago, and my Mother claims that many of her students were labeled "mentally retarded," although now, with all we have learned about Autism, she also sees that a fair portion of those exact same students were likely Autistic instead. That is all a side note, however, because I am getting back to my first friend with disability, Marsha.For some reason, she was my favorite of all my Mother's students. When ever I went to the school house, it was her I was looking for. Maybe we just connected? Maybe it's because she had long, dark, brown hair, and I admired that? She also had very shiny and pink skin, with patches all over her body. My Mother knew I liked Marsha, so when I asked, she confided in me that Marsha had been burned by a horrible fire, when she was just a child. This frightened me terribly, and I remember having nightmares that the fire would get to me too. I felt sorry for Marsha and all that had happened to her, but I wanted to be her friend more than that sorrow.Now, for a reason I don't know, one night Marsha needed to spend the night at our house. I was very excited, as this was probably my first sleep over. I remember clearing my stuffed animal collection off of the second, unused, twin bed in my room in preparation for her stay. The star of that collection, in my three year old eyes, without a doubt, was my life sized, hand made, and then nameless doll. By my standards today, this doll is as frightening as that fire, with all too realistic dark hair cut from a wig, a weird, shiny, satin chosen for the face, and the stitching was all sloppy, with threads disgracefully thick. In my young mind though, there was no word, no idea, for ugly, yet. There was only love for this doll.When Marsha finally came over, we played with my doll and other toys, watched TV and ate popcorn, and she even helped to give me a bath. I was thrilled! I went to sleep that night comforted by her presence in the room, next to me, by her friendship. When she had gone, and I have no memory of her beyond that night, I was playing alone again with my doll, and I somehow made the connection. I gave my doll a name, the name of my first disabled friend, Marsha. There was only love. 
