K is for Kindness

by Elise Ronan

Kindness and empathy are rather misunderstood emotions when it comes to those on the autism spectrum. There are recent studies that theorize that it’s not that autistics lack empathy or kindness; it’s just that they are so overwhelmed by their empathetic emotions that they need to turn them off or be consumed. So the issue surrounding autistics is not that they don’t empathize, but that, in fact, they empathize too much. Autistics, unlike their neurotypical peers, have no filter to protect their own emotions and their own well-being when dealing with the vagaries and cruelties of life.

I know. I have seen it firsthand with both of my boys.

It is never that the boys don’t care. It is, without a doubt, that when they hear of a cruelty or an unkindness it takes over their souls. It is not an obsession. It is not a perseveration. It is a feeling of being lost and not understanding that they cannot solve the world’s issues on their own. At times, they don’t seem to grasp that one can only do so much as an individual person. In fact, they feel that they have failed.

So that is our mission with them. Not to teach them to be empathetic but to help them understand their limitations as human beings — to know that you can give charity, help at a food bank, and feed people at a soup kitchen, but that in the end, there will still be those who go to bed hungry at night, and that you as a human being did not fail. We can only do so much as one person. They need to understand that our limitations make our efforts no less important, no less heartfelt, no less perfect, no less helpful, and no less appreciated in the moment.

It is times like this that I try, despite CM1′ s rejection of religion, to bring up what the Talmud says about kindness, empathy, and charity:

To save a single life is to have saved an entire world.

The Rabbis knew that human beings are just that — human beings. We can do just so much in our lives. It is the effort that counts. A single kindness, even holding open a door for the person behind you, makes this a better world. A smile, a thank you, and a helping hand, to the person right in front of you, says more about your life than anything else.

About the Author: Elise Ronan is the mother of two young men with Asperger’s Syndrome. This piece first appeared on her blog, Raising Asperger’s Kids, and is reprinted here by permission.

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The Other Side of Empathy

by Gavin Bollard

Disclaimer: The stance I’ve taken in this post is a bit strong, so I just want to make the point that I’m not blaming either party in a relationship; I’m simply presenting a one-sided argument to counter the many already strong and equally one-sided opposing arguments out there.

It’s a pretty common thing, particularly on discussion boards of ex-wives of Aspies, to see lack of empathy cited as a major issue. In fact, many such posts treat this lack of empathy as the primary cause of marital failure, totally ignoring other factors that lead to break-up.

In this post, I’m going to ignore the traditional views in order to try to look at things from the other side.

The Scenario
It’s been a difficult year for us so far. We thought that things were difficult last year when my son’s middle-aged tutor unexpectedly drowned in her own pool in a “freak accident” on New Year’s Day. Well, this year, it got worse.

The year started off with the death of my wife’s cousin in a horrific motor-scooter accident. He was in his twenties and left a baby behind. Since he was in New Zealand and we’re in Australia, we couldn’t make the funeral.

Then, about a week and a half ago, after a sudden series of strokes, my godfather passed away. He was only a few hours short of his 90th birthday. He was the last of his generation and probably my favourite indirect relative. He died in Queensland, which is a long distance from Sydney. Due to our recent “new house” expenditure, and then difficulty in getting the kids minded, we couldn’t afford to attend the funeral.

About three days after his death, my wife received a phone call from a stranger. He informed her that one of our best friends had suddenly died from an aneurism. She was 43. My wife pulled me out of a meeting at work to tell us that the girl we often referred to as “our other sister” had died. I had no reassuring words for her. All I could do was reiterate that it was a sad thing in my saddest tones. In this case, the funeral was in an even more remote location, and there was never any chance we could attend. Luckily, there’s a remembrance scheduled for later this week.

I thought that I was doing passably well, tiptoeing around my wife and casting sympathetic glances, until a few days later, when my wife angrily retorted, “Well, you haven’t exactly been full of empathy.”

Being on the “sending” end
Many people in any kind of relationship with an Aspie know what it’s like to be on the receiving end of so-called “limited empathy,” but what is the sending end like?

I’m sure that minimal demonstrations of empathy sometimes make our partners think that we’re cold and heartless.

What really irks me, though, is the fact that I haven’t yet shed a tear for any of these people — even though I felt really close to them. I haven’t felt that wave of uncontrollable sadness that sometimes unexpectedly rushes over you when it all catches up.

We aren’t cold emotionless robots and, truth be told, most Aspies are nowhere near the levels described in the literature. Grief, like other emotions, isn’t just a natural part of life, it’s also a major contributor to the healing process. As I write this, I feel like I’m full of poison that can’t be released until I can grieve properly. It’s not that I’m unable to feel emotion.  I can, and it’s often stronger than a typical NT reaction. Unfortunately, I can’t choose the time of its arrival.

I’m sure that I could “make myself feel sadness” if I sat and deliberately pondered on sad things until it caught up to me, but that would be “cheating.” Crocodile tears somehow just don’t make the grade. My “Inner Aspie” has enough issues with the idea of lying to others without my trying to lie to myself. No, it has to be real emotion, and it will come in its own good time, but meanwhile, I’m victimised because my body language isn’t displaying the right signs, and I’m not in a place where I can be the empathetic and supportive husband that my wife needs.

Needing to See
One of my biggest problems is that I need to see and experience an event before I can feel empathy properly. Second- and third-hand accounts do nothing for me. Even now, though mentally I know that I’ve lost these people, I still expect a phone call or a surprise visit. Not attending a funeral makes it impossible to internalize.

I should probably clarify, at this point, that I’m awful at funerals. They are times of intense emotion for me because they bring home, for the first time, painful truths that everyone else has had several days to get used to. I’m frequently reduced to a blubbing mess. It’s on these occasions that I find the NT empathy equation considerably lacking. My wife seems to understand, but I’ve had my mother suggest that I’m “over-reacting” at funerals because I didn’t seem so upset when the tragedy first occurred. It’s like she thinks that I’m crying for attention. I wonder, if my mother, who knows me better than most people, can think this, what does everyone else think?

I know that now I’m in danger of confusing emotion with empathy, so I’ll try to clarify. Crying at a funeral doesn’t necessarily mean that you are feeling empathetic towards others. Often, we’re simply crying over our own personal loss.

What such crying does do however is:

1. Paint us Aspies as human beings, not monsters.

2. Enable us to understand how others may feel.

Internal Feelings
Sometimes, not being able to find the desired emotional response in myself “makes my blood boil.” The worst times are when I feel myself getting teary over the wrong things. This hearkens back to the point about needing to experience and see an event.

It’s an awful feeling when, even though you can’t grieve for the loss of a person who was like a sister to you, you find yourself feeling sad because R2-D2 is going on a mission away from 3PO in the Clone Wars TV series. Worse still is when you can’t justify it by saying that you’re in a teary mood because you know in your heart that the moment would have made you twinge with sadness anyway. It’s simply the way I experience things.

Concluding
The main point I wanted to make here is that next time an NT starts complaining about the Aspie lack of empathy being the cause of their relationship break up, spare a thought for the Aspie in the relationship who can’t lie about feelings they know are there but don’t appear until conditions are right.

Their inner conflict causes them just as much pain as the outer pain that NTs display, but since they lack the facilities to convey the message, they can only watch in stunned silence as they are treated like unemotional robots and their relationship collapses around them.

Sometimes, too, it’s the Aspie experiencing all the emotion and the NTs who are lacking in empathy.

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 May 19, 2009 and is reprinted here by permission.

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The Yogurt Incident

by Lori

T's Dream

Sleeplessness

Recently, two consecutive nights of sleep vanished into the maw of an autistic child’s dreams.

The first evening, nightmares obliged me to haul my massive pillow collection to my son’s room for an all-nighter. I tried to rest as he whimpered and wiggled.  His dozing body sought me out, burrowing into my back and belly.  I would have slept on the floor, but I sensed he needed my physical presence to remain asleep.

Our second sleepless night opened with Tyoma’s hysterical complaint of not needing sleep, ever.  Our usual tricks did not work.  His stubborn frenzy kept him up hours past his regular bedtime.

During the second night, recurring nightmares left him wailing for company. At 5:30 a.m., he launched an irritable, fussy day with demands of an immediate bedroom vacuuming. Hours of perseveration, arguing and intractable obsessiveness followed.

For a child who sleeps and wakes regularly, it took a jarring event to shake his sleep schedule so intensely. What caused his nighttime terror?

The yogurt incident.

The Incident

Thursday afternoon during snack time, Tyoma amused his peers by twisting his yogurt tube. It burst, spattering the kids around him.

One of the spattered children was Hardy. Hardy has multiple food allergies. Hardy’s milk allergy is so acute that his contact with yogurt caused edema. His mother whisked him out of school for the day.

Tyoma related the experience after school.  His conscientious CM, Crystalyn, filled in the remaining details—Hardy was okay and Tyoma expressed concern for his friend in an expected manner.

T did not want to talk about the incident further, so I assumed all was well.

Until, of course, he woke up with his first nightmare:

Mickey Mouse (his plush) and he were sailing on his bed in the ocean. Suddenly, Mickey began to choke and turn blue, red and then purple. Mickey swelled up and fell in the water. Worst of all–he tearfully told me—Mickey’s face changed emotion. Mickey went from happy to sad.

The next morning, he refused breakfast.  He shook with clenched, white fists, begging to stay home.  He wailed as I buckled him into his bus seat.  Crystalyn and his para-educators worked to ease his anxiety over returning to Hardy’s afternoon kindergarten class.

Weeks later, the incident still resonates. Mickey Mouse has been consigned to the attic. The sight of yogurt tubes no longer upset Tyoma, but no amount of persuasion will get him to eat one. Yesterday, he jogged and jumped around the gross motor room, outlining plans to keep Hardy safe. “I don’t want to hurt a friend, ever,” he stated matter-of-factly.

Autism and Empathy

The issue in autism is not a lack of empathy, but rather a profound over-abundance of it. The terror of harming another person caused my son deep, psychic unrest.  Tyoma thinks and cares about Hardy. He will enforce class rules to keep Hardy safe. One day Tyoma will generalize this event, making his own rules, lists and schedules for a safer, more orderly world.

His nascent social consciousness must be recognized and nurtured. It is easy to mistake a flat or negative affect for indifference or egoism. An autistic person’s emotional sensitivity can cause retreat–a coping mechanism to protect an over-sensitive self.  I must guide my son to reap benefits from his emotional gifts instead of being crushed by them.

About the Author: Lori is a woman in her 40s. In 2009,  her son was diagnosed with autism. A year later, her father was diagnosed with Asperger’s Syndrome. And then she was diagnosed with Asperger’s Syndrome as well. This piece first appeared on her blog, A Quiet Week in the House, and is reprinted here by permission.

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Letting Go of Pain from the Past with Compassion

by Inner Aspie

The other day, I ran across this this article about dysfunctional families.  It took me aback a little bit.  I’ve held the words in my mind, processing it for days now.  This is how my mind works.  I mull things over, adding bits and pieces of information and understanding, until I build a better understanding of a new concept.  This process can take days, or it can take years.

As a child, I was always acutely aware of my mother’s sensitive feelings. I wanted to make her happy and proud of me.  When I had class parties, I’d always pick out the candies and treats she’d like best, before eating any myself.  I’d burst in the door with excitement, presenting the treats I’d gathered for her.  I’d do the same at gift shops at class field trips. I’d use most of the money I’d been given to buy her something before I would myself.  Sometimes, I’d not buy myself anything at all.  While the other kids were busy thinking about what they wanted to buy, or what would make them happy I was busy trying to make my mother happy.  This is, as one might have surmised by now, an endless task, as well as not my responsibility.  It’s unfortunately one I’ve carried with me as one of those painful lessons you learn as a child.  I never learned to look after myself first.  Of course, there are positives to this, in that I am a generous person and will share anything I have with anyone in need.  I can and do get taken advantage of as well.  I attracted people who were abusive to me, and I accepted their abuse as just the way it is in grade school, all along until adulthood.

My father is likely on the spectrum himself, and was emotionally unavailable, as well as physically unavailable due to working long hours.  When he was around, he expected order and quiet.  He never gave compliments and always let you know in a harshly critical manner when you were wrong.  I stayed away from him as much as possible, because we didn’t get along.  I got no support from him and my ability to out-argue him relentlessly got me labeled a troublemaker.

As you might imagine, my father was completely unable to handle my mother’s wildly swinging emotions and need for empathy.  He is simply unable to do so and she is unable to regulate herself.  I firmly believe she has Borderline Personality Disorder.  The two together was a recipe for disaster.  I became the person that things hinged on.  If things were good, I was good.  If things were bad, I was bad.  I was/am the scapegoat in the family.  My mother’s mental health declined year after year.  By the time I was in my adolescence, she was pretty neurotic.  With me about to leave the home, and my brother most of the way grown, she wasn’t as needed anymore.  She saw things that weren’t there and accused me of doing things I never did.  If I got a new friend, a boyfriend, or even an interest that took my time away from her, she’d come up with something that I had done or they’d done to keep me away from them — even going so far as to admitting me to mental hospitals, so she could get pity from family.  She believed that I summoned evil spirits to terrorize her and so many other things that were equally crazy.  Child Protective Services tried to remove me from the home at age 17.  My mother said I was responsible for that, too and refused to speak to me for quite awhile after that.

I was tragically scarred by these experiences.  As an adult now, I am putting things into perspective, allowing healing and new growth.  One of those processes is understanding what on earth made my mother behave the way she did/does.  As a mother myself, I can’t fathom treating my kids that way.  I have asked this question many times over, and the answer I believe is in this quote:

“When another person makes you suffer, it is because he suffers deeply within himself, and his suffering is spilling over.” Thich Nhat Hanh

I know my mother suffers.  She suffers greatly.  She can’t help it, but lets it pour over onto others, infecting them with her pain.  The last two years, we have not been on speaking terms at all.  Her pain of feeling abandoned by me was more than she could handle.  A conversation couldn’t go by where, out of the blue, I’d be told how all of my struggles with my ASD kids are my own fault for moving away from her.  She won’t visit me, because I made my own bed, so now I can lie in it, as far as she’s concerned.  Or if I’d be asking for advice about my daughter, she’d drop in that as long as she doesn’t grow up to be as ungrateful and mean spirited as me, then I’ll have escaped the real pain of motherhood that she has endured.  I finally could take it no more.  I told her to get help to manage her pain or leave me alone.  She chose leaving me alone.  That was painful.  It was awful for me, and I am still gathering up coping skills to help me deal with it.  I don’t think anyone ever really gets over something like that.  So, if anything, I have derived some comfort in knowing that it’s not me, or about me.  She just can’t contain her massive amount of pain and agony. This may be an important part for me to move forward, and letting myself feel worthy of love, life, and joy.

About the Author: Inner Aspie a stay-at-home mom with Asperger’s Syndrome. She has three kids: CJ, 13 (Dyslexic), Bubby, 9 (mild autism), and Beans, 7 (severe Autism). She loves being a mom and blogging about her adventures in parenting in an atypical household. This piece first appeared on her blog, Inner Aspie, and is reprinted here by permission.

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Windows #370

by Lydia Wayman

For perhaps the eighth or tenth time in the year it’s been since I moved here, I shall sleep in my bed.  I am desperately in love with my couch, but it’s kind of broken (Mom says it’s “sacked out,” whatever that means), and some nerve in my back was shouting at me.  So, to the bed I go, now.  This will be night… two?  Three?  The last two nights went well, but tonight it’s going on 1 AM and I still have blog posts rolling around in my fingers.  Oi vey.

Do you mind a bit of musing?  I thought not.  Buckle up, then.

As I said not terribly long ago, I worry.  I worry that I am too small a person for too big a job.  I worry that I will never be good enough or eloquent enough or find the right words to tell you what autism is really like.  I worry that I will step on toes, because most of the bloggers I interact with are mama-bloggers, and while I don’t for one second even fathom that I might know what’s better for their child than they do, I worry that at some point I’ll come across like I think that I do.  I worry about fitting in.  And I worry about continuity; when I read other blogs, there are links and themes that run from one post to the next to yet another… and I worry that all I have for you are windows.

Are windows enough?  They’re all I have.  So, tonight, as we close in on 1 AM and I sit here without my glasses on, I will offer you one more window (the 370th one since I began writing this blog over two years ago).

One of the things we work on around these parts is emotion identification.  This often takes the form of watching the ever-popular sitcom Friends, which frankly, has always gone a bit over my head.  But, with someone there to watch with me and explain the funny parts (which, on more than one occasion, has bordered on rather awkward, by nature of the show), well, I do alright, and if I’m in the right mood (which is often), it’s fun.

But I was thinking (and, I tell you, my fingers were literally trying to type while I was laying in my bed… you think a loud, I think a type, right?) that perhaps my issue is not one of lack of empathy, feeling, or knowledge, but rather… a difference of language.

What do you call the corner of exasperated and defeated?

It sits at the crossroads of frustrated and confused.

It’s when you need big, open spaces but you have tight corners.

And it’s when you want starry skies but you have a thick, dense, low fog.

It’s squinting through murky waters to see what’s just beyond.

It’s feeling like your fingers are tied down (or for you, like your mouth is taped shut).

I could go on, but my point is this: I know exactly what I’m feeling, and I can (if I’m typing) perfectly describe it to you.  No, I can’t sum it up in one nice little word like you might, but I can certainly explain how I feel, can’t I?  And, correct me if I’m wrong, but can’t you get some semblance of sense out of what I just described?

It’s rare to none you’ll probably ever hear me use feelings words verbally, and it’s none to forget about it you’ll hear me really describe it like I just did out loud.  My brain just doesn’t work that way… it works with my fingers instead of my mouth.

But if you’re willing to let me type, go ahead and ask me what I’m feeling.  Give me a moment to ponder.  I have no problem letting you know.

I just can’t promise it’ll be what you’re used to, eh?  (Have I mentioned that my typing is picking up Canadian bits and pieces?  It’s like copying someone’s style of speech, 0nly autisticly.)

Alright, folks.  The blinds are down, the curtains drawn.  And, back to that musing, I suppose the way I experience life is as a serious of windows.  My memory isn’t the best anymore, and my sensory system is uh, whacked, and that leaves me with very little continuity in things.  I function in boxes and windows.

Perhaps a blog and the windows it offers you are an appropriate medium by which to share myself and my life.

Now, would someone tell my fingers to go to bed already?  Take two, we shall.

About the Author: Lydia Wayman is a young woman with autism and the author of two books: Living in Technicolor: An autistic’s thoughts on raising a child with autism and Interview with Autism. This piece first appeared on her blog, Autistic Speaks, and is reprinted here by permission.

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Ineffable

by Lydia Wayman

If I knew what to say, I’d tell you a million little things that I’ve acquired in my brain over the weeks and months and lifetime.

If I could, I’d tell you that I’m so over age appropriateness.  You say Disney and American Girl isn’t age appropriate for me?  Well, excuse my language, but I say you can shove it.  I would, if I could, ask you what the point of encouraging age appropriate interests is.  Is it to make friends?  I have many, even more than I can keep track of sometimes.  Is it so that people will like me?  Hate to break it to you, but people already do like me (not everyone, but, well, obviously, right?).  Is it so that I can be normal?  And to what end, I would ask?  If I’m comfortable with it, you should be comfortable with it, and that’s that.

And if I could, I would say that that I’m so over normalcy.  Ask Chloe what “normal” means… she’ll tell you that it’s “just a setting on the washing machine.”  I would argue that “normal” is of no value outside of its statistical meaning, which is the mean or standard deviation of 0.  If “normal” means chasing down boys, going to bars, and trying to “get ahead”… all the while being unable to articulate your personal beliefs, values, and sense of self… well then, I rest my case, I would tell you.

If I could, I’d tell you that the peace that silence brings me is like a starry night and an open field.  It’s huge, it’s wondrous, it’s freeing.  I’d tell you that speech is harsh, cold, and metallic.  There is beauty in silence.  Rather than run from it, try embracing it.

If I could, I’d tell you that I’m still stuck on some aspects of theory of mind.  I simply cannot grasp that other humans have brains like mine that think thoughts like mine (this, coming from the girl who literally authors blog posts while she sleeps and dreams of typing).  I can’t grasp that people can think while other humans are present.  I ask, again, how does the world not explode?  I also get myself entirely confused when trying to figure out the essential aspects of a story which I must relay to another person in order for them to understand me.  I say too much or I say too little, but rarely do I get it just right.

And if I could… oh, I’d tell you.  I’d tell you that sometimes I feel like I ought to be doing a much better job of telling you what it’s like on the inside, so to speak.  I’d tell you that I have no direction, no idea where my writing is going, just that I need to write.  I’d tell you that sometimes I think that a more interesting, more relatable, or even a more autistic person ought to be writing, and not me.  I worry… I’d tell you.

I’d tell you… forgive the analogy, but something (I can’t seem to quite get what that something is) is like a woman in labor, here.  Whether it’s a revelation, a relationship, I do not know, but something is on the horizon.  I can feel it.

I’d ask you how people are meant to sleep at night when the world is in such pain.  Perhaps I don’t show much empathy, but I literally lose sleep over hunger, pain, death… of people who have no faces and no names, of animals, of life itself.

And, I do apologize, but I would implore you… I would say, “Educate!”  Tell just one person today something, anything about autism.  Shatter a stereotype.  There’s a whole world out there, and it’s ours for the taking, but we have to get past our shyness and educate.  My place is at my keyboard, and I thank God that I have found these keys and taught these fingers; where is your place?

I would tell, I would ask… I would even implore… but there are just no words, or none good enough.  But then, words are all we have.

About the Author: Lydia Wayman is a young woman with autism and the author of two books: Living in Technicolor: An autistic’s thoughts on raising a child with autism and Interview with Autism. This piece first appeared on her blog, Autistic Speaks, and is reprinted here by permission.

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Autism and Animals

by Elise Ronan

I noticed something very interesting the other day about my children and our pets. Suddenly, the pets seem to be more attached to the boys. Every time my oldest sits down on the couch, he has a 60-lb Wheaton Terrier throwing himself into his lap. The  boy then proceeds to spend the better part of the next hour scratching the Wheaton. This, of course, makes the Labradoodle jealous, so he comes over for his time. The Bichon doesn’t even try. She just heads over to me for her daily dose of attention. The interesting thing about all of this is that, in his almost ten years, the Wheaton has hardly noticed the boys. I don’t know what happened. But it is nice to see. There is genuine mutual love.

They say that dog therapy is good for children with autism. Besides the want of a family pet, that was the reason we got the dogs in the first place. But the dogs always seemed like my dogs and my husband’s dogs. They really never attached to the boys. Oh, that is not to say that the boys were not higher in the pack than the dogs. The animals knew that instinctively, but they just didn’t go out of their way for the boys’ attention. Now, the Labradoodle even cries at the edge of the older one’s bed if he is not getting up fast enough to play with him. The Wheaton rolls around on the younger one to wake him altogether.

The boys have always been empathetic to others, and have done a lot of charity work, but it’s nice to see a daily dose of caring for living, dependent creatures. They evoke a different kind of understanding of compassion that is very fulfilling.

Some of our latest discussions have been about animal cruelty and how the boys just don’t understand it at all. The younger one has always been somewhat of an animal activist. I remember that, when he was in middle school, I could not take him into the butcher’s because he would just fall apart. One day, he saw on the label that the chickens were “young,” and all hell broke loose. He started bawling so bad I had to have the butcher tell him that it did not mean the chickens did not have a long good life. He stopped crying long enough so that I could buy dinner, and the butchers went in the back and had a laugh. I also had to stop him in the A&P from trying to break open the lobster tank. He was going to save all the lobsters. I am actually really proud of his concern for animals and how they are treated. Because of some physical issues, I have not allowed him to go vegetarian, but I know that is the choice he is going to make in his life.

Caring for animals and concern for those who are defenseless are such wonderful empathetic emotions. They say animals are intuitive about good, caring people. Follow the animals. They know whether they are loved and they feel it from my boys on a daily basis.  Don’t let anyone tell you that those with ASD can’t love and feel emotion. We parents know better — and it’s not wishful thinking.

About the Author: Elise Ronan is the mother of two young men with Asperger’s Syndrome. This piece first appeared on her blog, Raising Asperger’s Kids, and is reprinted here by permission.

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