Voices of autistics, Voices of parents 3 comments

The Other Side of Empathy

By on May 28th, 2012

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 on May 24th, 2012

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 on May 21st, 2012

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 on May 17th, 2012

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 on May 14th, 2012

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 on May 10th, 2012

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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Twitter Vacation

By on May 7th, 2012

I am taking a break from twitter. Sometimes, the conversations there are not entirely good for me. I become overwhelmed by various forms of negativity. The negative harms me; it causes me exasperation and pain.

Yesterday I turned off twitter and left the house for a long walk to burn some very much unneeded mental and spiritual energy. But I consistently found myself walking too rapidly for my own good. Not only was the small journey less enjoyable than it could have been, but it also left me with tendinitis in my left Achilles and far more than my usual rheumatoid arthritis pain. Today, I can barely move about the house. Clearly, I did not leave twitter for a vacation soon enough!

I have some theories about my autistic tribe. Well, let me be more correct in my terminology: I have hypotheses about the people of my tribe. I will list the relevant ones here and then go on to what I consider to be some likely effects thereof:

1. I think that, contrary to popular belief, we may not be unemotional but, at least sometimes, hyper-emotional.

2. I think that, contrary to popular belief, we may not be lacking in empathy, but that at least some of us, some of the time, may have too much empathy.

3. I think that we may have leaky membranes separating us from the external world, and that as such:

A. Factors of that outside world may leak into us easily as we lack defenses.
B. Our internal state may leak factors of us uncontrolled into the space about us.

I think these hypotheses may be true of at least some members of my tribe, because they are true for me, and also because others have expressed similar thoughts. So these ideas are somewhat more than my projection of my specific personality onto others. These specific points of consideration are true for at least some of us.

These matters of our being and operation do have real effects upon us. They certainly have an effect upon me. During the past few days, several people on twitter have made statements that seem to be aimed more at the generation of heat than light. My problem with these statements is not that there is essential disagreement between us. I do not take issue with disagreements between people. The problem has been the method by which some have expressed their beliefs. In so many of these comments, there has been  a generally insulting tone toward anyone would disagree. And this tone has caused me trouble. When someone hurls a wide statement against anyone other than believers in a narrow and specific belief, then anyone not within that belief group is likely to be slighted or worse. That group of persons who would be scorned for disagreement has included me.

I find that I can ward off the negativity of only so many of these sorts of statements. After a while, after the reading some number of these things, I find a negative energy creeping into me. I find myself feeling the harm of undeserved criticism and the downside of emotions that I cannot even name. I find myself feeling anger toward anyone who would make such a comment in such a blanketing and hostile way. I find myself wanting not to argue in a formal and civil way, but rather to hurl some snide statement back at the one whose statement caused me harm.

And you see it did cause me harm. I am a spectrumite. My life is not so easy and not so rewarding as are the lives of a great many “normal” people. I live with doubt, and anxiety, and fear, and all manner of negativity each and every day. I live on the precipice of self-loathing, and depression, and despondency. Negativity I have; negativity I am sensitive to. Negativity leaks in so easily and sets off even more negativity.

For I do not like anger toward others, especially when I am the one harbouring it. I do not like the idea of vengeance, but even more when I myself feeling a primal drive toward it. I do not like that some external conditions can set off my imperfections and drive me toward a lack of concern for others and toward a dislike for them. I fear that the porous membrane that allowed the hurt to flow into me so easily is now allowing my hurt to flow out and onto others. I dislike my negativity because it hurts me and because it can hurt others — even more so because when it hurts others, it hurts me for having done it.

And of course there is this: so many of my tweeps are fellow spectrumites. And they are trapped in a world that does not work much better for them than it does for me. They have all my issues to deal with and that includes pain entering them and flowing from them so easily and with so little control. And the hell of it is that I fear that we hurt each other all too often and too deeply. How we seem to need the emotional flywheels and buffers of NTs! How worn out and decayed I can feel sometimes after time spent on twitter. It isn’t that anyone actually tried to hurt me. It just happened.

There is an underlying pain to much of autistic conversation. So often, it is the pain of what a person is going through. But this I can easily handle. When we stand with one another against the blows of the world, I feel the pain and the strength of togetherness. There is hope in such pain. The pain I cannot deal with is that which leaks into me and then evokes within me not the warmth of care and a desire to help, but rather the pain of coldness and rage. The pain I dislike is what I feel when my own imperfections are triggered: it is the pain of feeling myself reduced.

So I am going to take a twitter vacation for a little while. Some of the aspects of the twitter atmosphere have poisoned my very soul. I need some time to clear my self.

About the Author: Laura Nagle is in her mid-fifties. Although she was diagnosed as autistic while still in elementary school, she has no memory of it. Until she self-diagnosed with Asperger’s Syndrome several years ago, her life had been a blind exploration of autism. She firmly believes that she might have been able to accomplish more with her time had she been aware of her deepest self and been able to develop a life to fit. She presently owns a small architectural business in Williams, Arizona and is living without assistance. Her goals are to be part of the founding of autistic culture and to use her life’s experience to assist others on the spectrum to live better lives.

Twitter Vacation first appeared on her blog, Laura Nagle — Professionally Autistic, and is reprinted here by permission.

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Glass and Concrete

By on May 3rd, 2012

I place my hands on the glass wall,
pushing against one more boundary
between me and the world, as if my bare hands
could make the wall more solid, less breakable: and when
I lift them up, I see the remains of one language
I speak, an entire matrix of lines, swirls, and whorls
dictated by DNA, stamped onto the glass
in oil and sweat. The handprints won’t tell you

about the endless rooms in my attic brain full of
my memories in Super 8 film rolls coiled up and sleeping
which have been magically appearing since I was a year old;

or the rooms of computer hard drives storing facts, numbers,
and encyclopedia notes numbering somewhere in the octillions;

or the glass-shatter heart that sometimes fractures if I breathe,
or suck in air from the shock or suspended surprise
of someone else’s pain, or when one of my own free-floating
pieces of celluloid with razor blade edges slices my fingers
when I yank it out of my film projector and try
to stuff it back into the canister it escaped from. The handprints

won’t tell you that our family’s collective lips are sealed
about our green strangeness, the unuttered word
that I alone out of the clan speak: autism. The handprints

won’t tell you that I shut my eyes and imagine
the lost, the mute, and the gaunt lit with pain
and pulling razor blades out of their throats
appearing as time-delimited half-tones behind this wall:
Tommy the pinball wizard;
my grandmother made of cedar beams, Indian blood, and elocution;
and a lizard poet, white knuckled, hanging on
to a rollercoaster of pain for dear life,
just to name a few. But the handprints will tell you
that I am human.

I wonder if you can see them: sometimes, I know
that on your side, you only see graffiti-infested concrete,
slapped and glued with headlines about
how our hearts are hollow, how we live as alien mutants
among you in a universe of uncertainty, and how
the word “never” seems to creep into your speech about
us. And you wonder why I erect a glass wall? Some days,
I am forced to pour concrete and hide behind
the wall of cold cinnereal while I listen to the noise
coming from the other side and my eyes
flood and create another ocean: but eventually,
I raze the walls that I construct, and all that separates
me from the world is a stately barrier of glass.

Place your hands on the glass and line them up
with mine: can you feel
the warmth from breath and skin, sweat and
rhythm, blood like tom-toms pounding and marching
all through my body? This is how we can be,
hand to hand, eye to eye, toe to toe, once I feel
I can approach the glass. We touch, and it can melt away
into a membrane, or it can eventually evaporate
and become a ghost that we used to look at each other
through: this is the understanding I need, and the vision
that you need. But as long as you insist on concrete
slapped with pity, pithy headlines, and ignorance,
you will never feel my handprints. You will never
feel my warmth. And you will be convinced that I am a
comic, hollow being that can never feel. And all
the while, I will be drowning in another one of my oceans
behind that wall.

About the Author: Nicole Nicholson is an adult with Asperger’s who prose appears at Woman With Asperger’s, and whose poetry appears at Raven’s Wing Poetry. Glass and Concrete appears here by permission.

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Theory of War

By on April 30th, 2012

I’ve told this story before.

I didn’t have any theory of mind until I was 13.5. I have a very poor autobiographical memory, but I remember the acquisition vividly. I was in gym, attempting to serve a volleyball, and I turned to Sarah, monologuing in my head about something (a strategy I had developed last year to help me with thinking) and she was thinking. I had a mental stream of consciousness in my head. So did she. I looked around the gym. So did everyone.

I was thinking about them. They could think about me.

I would never feel safe again.

A lot of things changed with that realization. I’d never gained any information from eye contact, but now it terrified me. I’d been abused by my peers, but now I realized that there was a persistent mental component as well. That they wanted to hurt me. They thought about me being confused and scared, and they liked it. I’d been doing very well without any sort of therapy or medications for almost a year—I was back at the doctor’s within a month, got another new therapist, and soon started medication. My panic attacks began to last upwards of 36 hours. I started banging my head. I damaged my eyes. I started gouging out my skin. I got a staph infection, and I almost died, twice. I am covered in scars and discolorations.

I am told that I was not, before this discovery, an anxious child. I generally felt safe.

(Inside, if not out.)

I owe a lot to my discovery of theory of mind. I just can’t think of one positive.

I can’t pass the Sally-Ann tests, even now. The language confuses me. But I do know, now, that other people have minds, and they can think with them. About whatever they want. About me.

Which means I will never, ever be safe. I never was.

After all, it’s not just that other people have minds. It’s that they can think things I don’t. They can be thinking about me without my knowledge. But it gets worse.

They can be wrong.

Maybe because I’m autistic, and people think (there we go again, theory of mind) that this means I am a robot. I would love to be a robot, personally. I am always very concerned with accuracy. The thing that upsets me most about “autism science,” isn’t actually the dehumanization and the consequences—it’s the bad science. The most terrifying and distressing thing in the world to me is something being incorrect.

Maybe it’s because I’m autistic, and thus a robot. Maybe it’s because I’m autistic, and therefore a simpler, lesser, smaller brain and in desperate need of order. Maybe it’s because I’m autistic, and therefore abused, and I know the consequences of acting on mistaken beliefs about someone, know them in my bones.

It’s terrifying.

My ability to acknowledge other minds means that I can converse more effectively than I could before. It also means I am never, ever safe. It means that I can see people being wrong, and I can see other people accepting and believing and spreading the misinformation, and I have to keep quiet. But to me, danger and anxiety and this is wrong are all the same.

So I am never safe.

I have theory of mind, now. I’d like to call it something more accurate.

Maybe theory of war.

About the Author: Julia Bascom is an Autistic writer, and Just Stimming… is her internet home and the official depository of her collected writings about disability, disability justice, and growing up and living as an Autistic girl. Julia started writing when she was twelve and now makes speeches and presentations on Autistic identity and culture, as well as contributing to the blog LOVE-NOS.

Theory of War first appeared on her blog, Just Stimming…, and is reprinted here by permission

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Empathy, Autism, and Taking Things With a Grain of Salt

By on April 26th, 2012

You touch my cheek, tell me I’m beautiful and hug me fiercely. You crawl up in my lap at just the right times and you snuggle with me when I need it the most.

You giggle when I wiggle my eyebrows at you or cross my eyes. Sometimes all it takes is a smile to get a full belly laugh out of you.

You point out booboos and tell me they’ll be okay. You kiss my bruises and my scratches and offer to get me a bandaid for everything whether it needs one or not.

My tears bother you. You don’t like to see Mommy cry at all. You will wrap your little arms around my neck and hug me tight. You sit in my lap and let me sniff your hair as I regain my composure.

No one can tell me that you don’t have empathy. You love me like no one else. You are so sweet and caring. Even when you’re in the middle of a meltdown and your body is moving like a tornado, you will melt into me. You like nothing more than to be curled next to me as we sit on the couch together.

Early in the mornings on the weekends, you come to my room and wake me with little hands in my hair or a tiny voice that asks around fingers in your mouth if you can climb up. You lay beside me with your cold feet stuck to my legs, your arm around my head, your hands and face buried in my hair. You bring your stuffed animals and we all snuggle in together as you take each one and tickle my cheek with it.

You are fascinated with bugs and like to watch them crawl around fly all over the place. You will watch a necklace rocking back and forth on a display for as long as it moves. You love to watch the wind blow in the trees and make the leaves shake. You love to roll cars on the edge of the table and watch the wheels turn.

You like to line your breakfast up across the table in front of you or stack it in perfect little piles. You are fascinated with buttons and can’t keep your hands away from them. You hate for your sister to ride her toy towards your feet. You’re terrified that she might try to run them over. You will chase after the huge spiders that have been getting into the house but as soon as one comes toward you I hear shrill squeals and feet pounding against the floor as you run away.

I took you to the Monster Mash at your new school. You stayed close to me and your Mamaw because the kids running in circles was just too much for you. You found a little boy with a “Scream” mask and you were so fascinated with his mask that you walked right up and touched it. He was startled at first but then he figured out you were harmless and so he played with you and your brother. I could tell he recognized that you were a little different but he put the effort into playing with you. I’m so grateful he looked past the little boy jabbering incoherently at him and saw your curiosity. He made your brother giggle and squeal as he would sneak around and poke his head out at him. He wasn’t afraid and was actually enjoying the game. He loves to be chased, after all.

I’m proud of you for not having any meltdowns even though I know that was overwhelming for you. You all did so well. You are all doing so well. Mommy is proud of you. So proud of you all.

About the Author: Forgotten is a mom to three children, including five-year-old twin boys with autism. This piece first appeared on her blog, Fairy Tale Forgotten, and appears here by permission.

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