Author: Ken

Diablogue #25

(Ken asks: “What “L” word. I answer: Love Actually [movie]:” we laugh)

Note: We’re back. Ken has had a great deal of trouble over the holidays and since with ongoing challenges with accommodations and negotiations at his place of work; it has taken all his energy. We were going to do the first blog of 2018 about New Year’s resolutions, but since we were on the cusp of Valentine’s Day, we had a change of heart. Love is in the air, and thus so is the question: “What is love, in our kind of relationship?”

Before we knew much about autism and that Ken was autistic, we knew even less about autism and love. Now, being together, we have discovered Ken’s differences, and  “love” is no different. He – therefore we – love(s) differently.

Helpful hint: Different love is still love– no less important, no less valid, and no less true.

So, let’s diablogue

Ken: I have always comprehended the substance, however, not the necessarily the essence, of Valentine’s Day. When I give or do something for you, and it makes you happy, it makes the world seem right to me. I don’t do it because it makes me happy. Happiness to me is service—doing things for others that make them happy. That means I’ve done something right in the world; the world is at equilibrium, at that moment.

Each couples’ love is the seed of a tree taking root in a forest; it can’t be sustained alone. It has to radiate outwards to the other trees, to the family, the community, to the world. Love that stays mostly or only with the couple is doomed to hardship. Love wasn’t meant to stay locked up and insular. It must radiate out—and that makes the world well.

Christina: And I see that when you achieve equilibrium it is because an issue, even if tiny, has been addressed. An anxiety lessened. A need met. A pattern completed. Psychic and social balance. 

Ken: About Valentine’s Day. I have spent a great deal of time observing it; however, in my ignorance and lack of comprehension of its innuendo, nuances and subtleties, I have spent very little time in its observance. Altruism—that, for me, is Valentine’s Day every day. 

Christina: That’s a lot of observing—and not!  

Ken: I am aware of the wonderful ritual and pattern; however, I am not sure I comprehend the essence of it. I sense that it is right when I give or do something for you; however, where I surmise I have a problem is… I know I’m supposed to please you, to have a wonderful effect on you. But I always have to guess if it does because I do not comprehend the essence. What makes me feel good is making you feel good.

Christina: You mean ‘doing Valentine’s Day’ as in the ritual of buying a card, chocolates, all that. Ok.

Ken: Yes, and it is personally important that I remember and treat you with reverance.

Christina: Why?

Ken: I may not fully comprehend the essence of Valentine’s Day, but it does have a positive social effect on people. Let me put it this way, it is like the wind blowing the leaves on a tree. One cannot see the wind; however, one can observe the effect of the wind.

Christina: So what effects do you see?

Ken: Connection, reconnection, people hugging and smiling. Being nice to one another—even if for only for day.

Christina: Yes.

Ken: One thing I observe in myself that leads to these questions is: Am I doing this merely mechanically, robotically, and on schedule, or is there something else that I’m contributing to Valentine’s Day—for us— that is emotional and human? Perhaps by listening to your answers I can answer my questions. What does Valentine’s Day mean to you and what do you need and want from it?  Do I fill those needs? And with me, an autistic person, what are you getting out of Valentine’s Day?

Christina: That’s three questions. One at a time…

Ken: First I want to comprehend the world view of Valentine’s Day. Then how you comprehend it, and what you are giving up by being with me—which will also answer what you gain by being with me. What needs do I fill for you and what do I offer that compensates?

Christina: Good last questions—and you need to answer those for me as well.

Ken: I can answer them now: The need for me you fill on Valentine’s Day is that I become part of the observance of the day rather than merely observing people that day.

Christina: Got it. But personally, do you benefit in some way from me buying you a card and saying nice things?

Ken: As I miss the social mark so often, and you have the tough job of staying with me when I do, it pays back a little, this refills the cup, this helps refresh and refill. I’m very much aware that I’m a huge burden.

Christina: Interjects ….That’s not a healthy way to think.

Ken: Perhaps not healthy; however, valid.

Christina: How does it show?

Ken: Enacting Valentine’s Day demonstrates that I am not a robot, rather just a different type of human being who does not necessarily comprehend the correct pattern but is still able to have a pattern that is no less correct— it’s just different. I love hard and hurt hard. It’s just that most people will never comprehend or see it. Perhaps Aspies love and hurt deeper and harder than non-autistics; however, most people will never see it, as we do not express it—we’re not good with emotional nuances, innuendo, and subtleties. We seem to feel emotions either intensely or not at all and inappropriately; we have less range of emotional expressions. We speak a different body language and emotional language than the rest of the world. Therefore, there is no translation, no dictionary and no manual, so it becomes a lack of communication and lack of connection with others. However, make no mistake, we know what love is to us, and what not having it is like.

Christina: I understand. Truly. Now, back to your first question about Valentine’s Day and what it means, generally. I can’t speak for the world. But for most people I think it’s a chance to go ‘full blown romantic,’ like in the movies—Sleepless in Seattle. A wedding day is the same—at least in our culture. They are both one of those rare magical and ephemeral life relationship moments that allow us—compel us— to focus intensely on all the good things about our chosen partners.

Ken: When you say relationship—I struggle with two aspects: the social and the emotional.

Christina: Yes, I know that’s what makes this hard for you. I think that for many people, Valentine’s Day is the day when they celebrate—even playfully flaunt—their relationship with their partner. And it’s great to revel in it, all those good things. So, we are extra nice to each other, pick out and sign mushy cards, do the heart-shaped chocolate box ritual, go out to dinner—ideally candlelight.

Ken: Interjects… “Ken, don’t eat the chocolate strawberries again…” (we both laugh at the painfully funny memory of an early date mishap.)

Christina: Right. And in doing all that, by participating in this symbolic annual act, we encapsulate and intensify our loving and caring feelings for each other…

Ken: We remind ourselves to keep doing that, to focus on each other, and on others, not on ourselves. It reminds ourselves to think about other people, hug them, kiss them, celebrate them.  It reminds us to celebrate the emotional good in one another other—and that’s emotionally healthy.

Christina: Absolutely.  After all, those feelings between us are very real. By doing Valentines day (and every day as we can) we’re acknowledging them as important—even as what’s most important. And even though the feelings don’t stay focused like that through the daily ups and downs of living, they’re still there. Of course, some people say that Valentine’s Day is just a marketing brouhaha, a chance for business people to make money from love. In the past, I’ve looked at it that way sometimes. But I’ve softened. Now I prefer to see it as a meaningful, person-to-person ceremony. It’s what we make it, really.

Ken: Well, if humans are going to market anything, why not market love? There are many things a lot less valuable to the human condition.

Christina: Good point! Very un-cynical.

Ken: “If you’re busy making love, you’re too busy to make war.” ~ John Lennon

Christina: Very logical. Very true. Your next question was, what do I think of Valentine’s Day? Well, that’s evolved over time. It’s pretty simple now. I enjoy participating in the larger social ritual, and I like the idea of you observing it, doing it—so I can comment about it with friends. I’m not above that social effect! “Oh, that’s so sweet,” they say. And I feel good; I have proof that my man is romantic. Acting like the socially “ideal” man. Like the ones in the movies that women swoon over—and for a reason.  Swooning and powerful emotions serve a very real purpose in the world—they throw people together to carry on the species. They, among other things like purpose and diverse human connections, keep life worth living.

Ken: Interesting.

Christina: So, when you ‘do’ Valentine’s Day rituals, I get to play out a deeply socially ingrained and evolutionarily essential schema. And somewhere deep inside of me, that feels good. But you know as well as I do that I sometimes even miss noticing Valentine’s Day is here—I get distracted. Those social marker dates have never really been important to me—which is probably a sign of how I have come to be with an Asperger partner—some things are just less important to me than to others, for whatever reason. But you never forget about social ritual days like Valentine’s Day or my birthday, thanks to your wonderful, inescapable, vast data storage system—which I depend on so much for so many things!

Ken: Yes. So, regarding Valentine’s Day specifically, what has it meant to you on your own, how did you participate in it before me, and what are you getting out of it now with me, and what’s the difference?

Christina: First, what a person ‘gets’ out of ritual social days is different for every relationship. This isn’t just about a non-autistic partner and an autistic one. It’s about me growing and changing, and especially, me changing what I expect because of you—now that I know you are autistic—and not holding anything against you that you cannot deliver. That’s an essential shift, because if I went through every Valentine’s Day or any other romantic ritual moment pining for things I might have received or felt from other relationships, that would break us up. So, reason and kindness have to kick in. For example, I know that you—like most other autistic people I’ve ever encountered, have one of the biggest hearts—either for others or for other living creatures— that it’s possible to have. On a broad scale you are ultra-kind, ultra-compassionate and truly altruistic.

Ken: Thank you; if I know exactly when and how to show it, perhaps. The most important thing to me in my life—even though it may not always appear that way—is your health and happiness. However, I rely on you –and this is maybe where the hole lies— to tell me what you need to make you happy. Like a script in a movie, if I know what I need to do to meet those expectations, then I will cross miles of broken glass to do it. There’s the problem: if you tell an Aspie what to do, or what you need, they will love you to death; however, if it is subtle, we won’t read it. If you tell us what to do, we will exhaust ourselves, kill ourselves, to do it.

Christina: So, you want to know what am I getting from you in place of what I’m giving up?

Ken: Affirmative. What makes Valentine’s Day and staying with me worth it?  You can’t just be giving things in this relationship. Nobody can answer this question but you.

Christina: First, in terms of romantic acts as viewed by others, I’m getting a lot. The fact that I don’t get some emotional nuances of them is a question of balance—and a conscious decision to make those things less of a priority. Since your diagnosis 7 years ago I have learned to build—figuratively— the structures I need, the emotional underpinnings that I instinctively crave, beneath those surface acts of yours. To see things that don’t seem to be there from non-autistics’ standpoints—but actually are—though in different forms. People watching us, for example, often comment, “Oh’ that’s so romantic!” or “Oh, you two are so in love!” And they’re right, except that different things are going on below the surfaces, likely, than for most couples. Non-autistic couples. But to answer your question simply about what I’m giving up: I don’t feel the deep surges of emotion that I know exist for other couples, and that are really nice to feel. You don’t send out those sensory-emotive vibes, and so they aren’t there for me to pick up and respond to. But in your actions and in your absolute remembrances of them—never forgetting, always committing, always being there— you do send out powerful waves of caring, caring about me, caring about showing that caring, and caring about us as a couple.  Those are rock solid. Immoveable. I feel that, and that’s irresistible. As a caring, intelligent person myself I can—at least most of the time—easily swap one kind of feeling for the other. A man who will go to the ends of the earth for his woman is a wonderful man, a man most women would kill for, a man well worth loving. And that’s what I have. So, am I sacrificing? Not really. I’m trading. Willingly.

Ken: Wow, that is overwhelming. I am so busy trying to be what to you I already am. That being said, I will never stop trying to be a better man. That is how I love you.

Ken’s after-note: Apologies to our readers, but this post is rather long. However, who can create a short one about the complex and ephemeral thing called “Love”?!

Next post: ~ Yet to be determined

Diablogue #24

Helpful hint: We’re people, not plots.

Helpful aphorism: “Autism: Why blather?”

So, let’s diablogue

An exploration of Ken’s observation: “We were being used as a plot device even before Asperger’s Syndrome was even known.”

Christina: So, continuing from last post, Nov. 19, we’re talking about autism as a plot device or as characters in popular media and the kinds of problems or misrepresentations—and also some good things—that can result.

Ken: Yes. The first example of major media underpinned by, and displaying, autistics’ ways of seeing the world was Star Trek in September 1966. I immediately identified with Mr. Spock, portrayed by Leonard Nimoy—who is posthumously thought to be Aspie— because of the way he behaved, acted, and reacted. It was and is very much like the way I behave, act, and react. At that moment, I began to realize that I was not the only one, alone; alone—all one. Sorry! More wordplay. In any case, I realized then that I was not as odd as I thought, and my oddities were not all negative.

Christina: I see. Of course, nobody knew that autism, Asperger’s Syndrome, was behind the character and that Gene Roddenberry was likely autistic, an Aspie himself.

Ken: Correct. And I did not know that I was autistic, an Aspie myself. Nor did anyone else at the time, either.

Christina: And that started the autism visibility trend in social media—and since then we’ve seen…

Ken: Television shows: The Bridge, Big Bang Theory, Atypcial, Numbers—NUMB3RS, Touched, Movies…Rain Man, Dustin Hoffman portraying Raymond/Rain Man is also thought to be an Aspie, Adam, Mozart and the Whale, starring Josh Hartnett, thought to be an Aspie,  Marry and Max, Philip Seymour Hoffman also thought to be Aspie, performing the voice of Max, Bicentennial Man, starring Robin Williams who was thought to be both ADHD and Aspie, A Beautiful Mind…. though John Nash In 1959 he was diagnosed with Paranoid Schizophrenia, although he was also thought to be Aspie as well, The Aviator, Carrie Pilby, although Autism and/or Asperger’s Syndrome are never mentioned, the character of Carrie Pilby, checks all the box and is a text book example of an Aspie, The Accountant, etc. All have characters that appear to be Autistic, near Autistic, Asperger’s Syndrome, near Asperger’s Syndrome, on the Autism Spectrum or near Spectrum.

Christina: Wow. Amazing list. I haven’t seen some of those. But the ones I have seen I’ve connected with in different ways. So, at least to a degree, I think it’s great that autism–even if the condition or term isn’t mentioned it, and even if the producers or directors are not aware that they’re doing it—are portraying autistic characters.

Ken: Yes. However, the problem is that it has gone from little or no information to a great deal of misinformation and disinformation.

Christina: What do you mean?

Ken: The creators of these movies, TV shows, plays, or books and whatnot are often not autistic themselves or have no connection to autism, and they are inadvertently writing a character type as a plot device or as a foil to another character. That character clearly has autistic traits. However, they unavoidably do it from the point of view of a non-autistic person.

Christina: So, they create an autism stereotype. Right. Such as super weird and super smart—even savant. I read about a parent of an autistic boy saying that people ask him, “So, what’s your son’s special ability?” But the kid doesn’t have a special ability; he’s just ordinary with a different way of thinking and being, and hurting from being misunderstood. The father found himself endlessly ‘apologizing, almost, for his son’s LACK of amazing talent with numbers or memory. That’s tragic. But I know that some directors hire autistic people to be consultants…

Ken: That is correct. However, this is very recent trend, and a welcome one. Still, perhaps the damage is already done; only time will tell. Up until this point, across all manner of social media, autism has been only partially represented and often significantly misrepresented, which has led to people misjudging autistic people. Misjudging me.

Christina: So, because people see autism in the media as this or that, they expect you do be like that…it gives all autistics a bum rap for being things they are not. Which is a disservice to you. To understanding you. Stereotypes make people assume things. And when we start with assumptions, it’s really hard to let them go.

Ken: They begin to believe the paint is the real thing.

Christina: The paint is how people with Asperger’s are painted in popular media. Fake paint. As plot devices. As characters.

Ken: In actuality, I would say that some autistic stereotypes—such as logical thinking and social awkwardness— are harmless because they are in fact borne out by research as mostly true. The difficulty comes when non-autistic characteristics such as use of profanity are grafted onto otherwise accurate Aspie characters.

Christina: Such as?

Ken: Sheldon on Big Bang Theory. He is portrayed as having an average intelligence—a common Aspie trait—but also, as a potty mouth. Once the public views the autistic character like this they might think all people with Asperger’s are the same. Anyone who is verbal and on the spectrum, tends not to use profanity because it is imprecise, illogical, and emotional. Therefore, Sheldon being a potty mouth is the disinformation part; that aspect of his characterization paints an inaccurate picture of Asperger’s.

Christina: The creators see some cool traits in real autism, then mix and match to make a good story. But they hurt Aspies and autism in the process.

Ken: So: Autism—Asperger’s Syndrome in particular—as a plot device: To use it or not to use it, that is the question.

Christina: My vote would be that anyone wanting to use it MUST get a real Aspie as a consultant and listen to what he or she says. I know a few of the newer films have done that—so that’s great. Because if they don’t, they’re probably going to mess it up and hurt some people out there. Some parents. Some kids.

Ken: In any case, I surmise that, as people on the spectrum, we have, are currently, and will continue to be used as a plot device. We were being used as such even before Asperger’s Syndrome was even known. We will continue to be used because it works; people like to see differences—to marvel, to gawk, to wonder about. And certainly, those with Asperger’s fit that bill. We see things differently, we live differently, we think differently, we respond differently, and we behave differently from non-autistics. The status quo finds difference fascinating.

Christina: I agree. Funny sometimes. Sad, other times. So, you agree with my view?

Ken: Yes. I would say that we should not try to get it stopped. Instead, we should encourage more diligent and responsible work. More filmmakers should make people with Autism part of the process so that we can ensure that the information is a correct and accurate representation of us.

Next post: ~ Are autistic people aware that their behavior is ‘autistic’ and in order to fit in, are they putting on a show? Performing?

Diablogue #23

Note: This blog post was set to be published Oct. 22, but we got tangled up in its length and then, life intervened. We’re now publishing it as a two-part post, one today, one next week. Please comment—we value your thoughts, thank you for your understanding and support.

Helpful hint: We’re people, not plots.

Helpful aphorism: “Autism: Why plot against us?”

So, let’s diablogue

Ken: I surmise the pendulum of Autism awareness has swung from one end of the arc—obscurity—to the other end—to today’s buzz word.

Christina: Flavour of the month. Catch of the day. I agree; it seems to be all over the news and popular media.

Ken: This is human nature.

Christina: Yes. Something catches our attention, becomes “sexy,” then it’s everywhere.

Ken: I think some history is in order. Asperger’s Syndrome—now considered part of the autism spectrum—is named after Dr. Hans Asperger who diagnosed the difference between autism and Asperger’s in Austria in 1944. Asperger’s research remained virtually unknown or ignored until Dr. Lorna Wing’s “Asperger Syndrome: A Clinical Account,” a 1981 academic paper that popularised the research of Hans Asperger and introduced the term “Asperger syndrome.” Since then, there has been a slow awareness, awakening, and acceptance of this very unusual physiological and cognitive difference. We’re almost normal, but quirky enough to be a curiosity….

Christina: …even attractive (laughs). Well, it’s attractive on the outside: loveably geeky, hilariously quirky, and endearingly different. Like the character Sheldon Cooper on The  Big Bang Theory television show. That is, until a non-autistic person lives up close and personal with an autistic and experiences all the realities of the different mixing brains—the frustrating communications, confounding contradictions, and the needs both ways that the other can never fully understand—and that won’t ever change. But yeah, autism seems to be ‘hot’ in popular media now. TV shows, talk shows, people ‘coming out,’ documentaries, blogs… and mainstream movies.

Ken: As well as posthumous diagnoses of famous eccentrics.

Christina: Yup. You know, in theatre and other arts, it’s the unusual, the unconventional characters or ways of thinking that draw our attention. That make us buy tickets and go to shows. We seem driven to wrestle with—or laugh at—-the people and ideas that push us to think differently. They make the best stories, the best characters. Asperger’s certainly fits with that.

Ken: And autism is my character. It’s who I am. You do not have to play the character if you are a character—

Christina: Explain that? You are playing a character?

Ken: Affirmative. Every day. I attempt to act ordinary, average, since that is the environment I live and work in. Performing “normal” is how I survive, socially, though it is tremendously draining.

Christina: For sure. We’ve talked a lot about that.

Ken: People appear to be fascinated and enthralled by the odd and quirky—which we call “eccentric” if the person is in some way famous or has a certain degree of celebrity.

Christina: That’s because from an evolutionary standpoint, it’s the divergent thinkers who move societies forward. Advance them. Push the others just enough outside of their comfort zones to help them discover things that make life easier or better—make us more likely to survive and thrive.

Ken: Agreed.

Christina: Remember, Shakespeare said all the world’s a stage and we are ALL merely players. Since he’s a posthumously diagnosed Aspie, that’s especially interesting. But I can see that for you, it’s certainly more obvious than for non-autistics. You know you are ‘playing’ a character in daily life. You work every day to play that “ordinary” character as well as you can—to not stick out, as you say. Non-autistics mostly deny they’re acting on the daily stage—though it’s true. We all perform “us” in hopes that others see and judge us how we want to be seen and judged. It’s ordinary social survival.

Ken: You know how we say that we judge a person by his or her character? That’s what I’m talking about. People use the word very generically, as in, “that’s in his character” or he or she “is a real character.”

Christina: And YOU are a version of the kind of characters that more and more producers are aiming to show in the plays and movies.

Ken: There is a quote I want to interject here: “To those who are willing, the gods will guide, to those who are unwilling, the gods will drag kicking and screaming.” Is it not interesting that the god of thespians is Janus, the two-faced god: happy and sad, comedy/tragedy— which is also a perfect exemplar of the binary nature of autism.

Christina: How so?

Ken: First, thespians are characters themselves as well as portraying characters who are often odd or at odds and/or eccentric, and their symbol is the comedy/tragedy faces—binary opposites. Like me. Like all autistic people. I would therefore propose that theatre is based upon autism.

Christina: Wow, that’s a cool claim. I wonder what theatre folks would think of that. I hope some comment.

Ken: This thought occurred me a long time ago.

Christina: Our point with all this is that autistics are popping up all over the place in media—writers and directors are using them as central characters, like x in y, or as plot devices. And that has two faces: the happy: autism gets talked about, normalized, even. And sad: autism gets misrepresented—not all autistics have superpowers!

Ken: Indeed. Next post I want to look at a trajectory of autism in the movies. One of the first covert examples was Star Trek, then later, we saw characters with obviously autistic traits but the word ‘austim’ was never used, and lately with autism clearly stated as a key—and both fortunate and unfortunate— attribute of a character. More realistic, I’d say, and a lot more helpful.

Christina: Ok.

Next post: ~ Autism— Asperger’s Syndrome in particular— as a plot device, Part 2. An exploration of Ken’s observation: “We were being used as a plot device even before Asperger’s Syndrome was even known.”

Diablogue #22

Helpful hint: It won’t work without work.

So, let’s diablogue

Christina: This morning I woke up and thought we should talk about the very real thing that’s happening right now. Visceral. Personal. We’re working it out. So we should do it here. (Pause as Ken reads what I wrote.)

Wow, that’s taking a long time to read!

Ken: Right now, it’s taking all I have got to not think about the list of things on my mind that I just wrote out. I have to read your start to this blog entry three or four times to force it in.

Christina: OK. We’ll go slowly. Yesterday I made—with considerable effort—a big pot of homemade soup. Winter is coming, time to hunker down, time for soup. And I wanted healthy food around for the next few days. Then I had to go out for the evening—a girls’ night— and I asked: “Please could you find containers and put the soup away so we don’t get food poisoning!?” And you sighed. Looked annoyed. And that hurt.

Ken: On the drive to the girls’ night, you talked to me about it and explained what my reaction did to you, how it made you feel. As usual, due to my need for processing, there is a delay in setting things right. Especially at this time.

Christina: Yup. I got out of the car upset. But I know about these delays. I knew you’d need time to understand… and then we’d talk further about it.

Ken: I forced my mental cacophony to the side and wedged in some processing capacity to deal with this, as I sensed the immediacy. Shortly after dropping you off, I texted you and apologized.

Christina: I got the text and appreciated it. It’s normal for husbands to be a bit thick about noticing things, about appreciating small acts. But this incident has some different causes, Aspie roots. Once again, what things look like on the surface needed to be re-interpreted through the autism lens—to be fair.

Ken: What is happening is that I am reaching my capacity and becoming overloaded and overwhelmed. I am imminently facing a cascade failure. And it is starting to cause collateral damage and negative repercussions on my external surroundings and relationships. I believe that this is a result of a common Aspie trait: challenges with executive functioning. Prioritizing. I am often told, “Don’t sweat the small stuff.” For me there is no small stuff or big stuff, just a lot of stuff.

Christina: Yes. 20 minutes ago, you pulled out a blank sheet of paper and scratched out a long list of things on your mind right now. It’s mammoth. Things with work scheduling, a dripping faucet, trip plans, family worries, money issues, and fixing home computers. And you scribbled notes on physical problems between the items; they’re all related and making everything worse. You’re not sleeping or eating properly and having stomach problems.

Ken: Correct. An abundance of things.

Christina: No wonder you’ve been having serial headaches the last couple of weeks. And I know you’ve been stuffing all those worries out of concern for me. My life has been exceptionally busy and stressful with school start-up—teaching two new courses, family issues, a collaborative play revving back up, the film project starting, a final course presentation, worrying about finishing my PhD., helping friends, social engagements…it’s crazy. And you always want to protect me from further worries—from what you consider to be “your problems.”

Ken: Correct. However, I believe that “crazy” to describe your life right now is an extreme understatement. As a man and your husband, my core tells me that I am supposed to be your support system, not a system of burden or burdens… but I am so tight right now that I am in physical pain. This occurs intermittently in life when things accumulate and I have nowhere to offload. The following link—which we recently discovered— has helped me to better understand what is going on, what to do about this, how to explain it, and how to ask for assistance: The Constant Demand, and what they DON’T SEE!

Christina: That’s a great explanation from another adult Aspie website. I want to actually copy a piece of it here now:

“They don’t see the tears.  They don’t see the meltdowns.  They don’t see the panic attacks.  They don’t see the bolting up in bed at night soaked in sweat, head reeling with all the things that are not done, and they don’t see that this ONE thing that you are doing so awesomely is the ONLY thing that you do because it takes every single thing that you have within you to do it!  They don’t see the costs…”

Not seeing what’s really going on with you is a constant risk to our relationship. And it’s reciprocal, of course—you also often don’t really see what’s going on with me. How can we? We have different wiring on TOP of the ordinary male-female evolutionary differences.

Ken: A very accurate, astute, and true assessment.

Christina: I know that feelings and emotions cause physical repercussions in you. Headaches that can turn into migraines, stumbling and tripping, inability to think straight. I often feel badly that I don’t immediately connect some of these symptoms to their root causes. I should know better by now. I’m still working on it. But at least I can head off most of my initial reactions, take some deep breaths, and talk with you—quietly explain what’s going on from my vantage point. That’s been my journey, to get to that point where I don’t commit a knee-jerk unkindness by forgetting that you and I are different; what things look like on the surface is usually NOT what’s happening, for both of us….

Ken: A knee-jerk unkindness is too often my reaction, and I would do well to emulate your example.

Christina: ….and so we stopped this incident pretty quickly—once you divulged it to me; we brought it to a happy ending over breakfast at Uncle Albert’s.

Ken: Affirmative. I showed you the list.

Christina: And I took it and started circling and categorizing the items: High, medium, and low priority. And I wrote a few ideas under each one about how we could handle it or why it can wait.

Ken: You did what I cannot do. And everything changed.

Christina: So, it’s better.

Ken: Absolutely. It may seem like an easy task, to create lists, to create a map to navigate by. However, to reiterate— for me there is no small stuff or big stuff, just a lot of stuff. So, I do not know where to start. This is your great gift to me: you know where to start. I am so grateful to have you and your skill set in my life. Life would be extremely difficult without you and them. Thank you.

Christina: I’m glad. And that was really a pretty easy fix. The key was for me to NOT assume that unkind response of yours was intentionally rude, callous, or a covert comment that my soup-making wasn’t valued.

Ken: It was none of that. It is constant fear of failure as a man and a husband. After all it is a very short journey from husband hasben (has been).

Christina: No. You were simply cognitively and emotionally overloaded, near the shut-down stage, from a burgeoning internal ‘to do’ list of what you felt as equal-priority things that you didn’t talk about in order to protect me.

Ken: Correct, unfortunately.

Christina: I’m glad we worked it out. And thanks for putting the soup away, after all!

Ken: You are welcome and it was absolutely delicious as always by the way.

Next Post: ~ To use or not to use Autism as a plot device?

Diablogue #21

Helpful Hint: Autism is neither a gift nor a curse. It’s just a difference. No more, no less. We need to get to that realization as a society.

So, let’s diablogue:

Christina: It was a rush when Adam came up to us in the pews before his show and said, “You’re the people who write the relationship diablogue.”

Ken: It was one of those little surprise treasure moments: “Who would have thought that we would meet one of our followers in Edmonton?!”

Christina: Right. I never put two and two together after we read and enjoyed Adam’s comments on our blog and then I saw the notice about his show, Asperger’s: A Tale of A Social Misfit, on the Autism Edmonton web site.

Ken: It was nice to see an autism advocate at work. I found his material to be very familiar and poignant and simultaneously sad and hilarious.

Christina: Yes, a lot of mixed feelings for you. But for me, it was mostly just delightful because he was so clever and funny—he had both of us laughing hard throughout. Everyone laughed a lot, but I think we had the inside track on some of his jokes.

Ken: I found myself laughing at him and with him as he was able to make me laugh at myself. It was cathartic.

Christina: Yeah, I think it affected me a little in that way too, since you and I struggle sometimes with the hard realities of autism. But his performance also made me like you more. Or EVEN more, I should say!

Ken: Specify?

Christina: Adam was up there being himself for 40 minutes nonstop, and everyone loved him. This rarely happens in quite the same way when you and I are out and about in the world. I mean, sometimes you are killingly funny or insightful about human foibles—especially your own. But it’s often hard work for you, and for me when I’m with you, to sustain lengthy social interaction with others—never mind being funny. Soon into almost any social interaction, we usually run into some kind of social discomfort—even if others don’t notice. So, being with an Aspie who was talking for 40 minutes straight with nothing going socially awry was just…. lovely.

Ken: Tell me more.

Christina: Of course the two situations are not the same: Adam’s crafted show poking fun at social awkwardness and you and I in a unscripted social situation with friends.

Ken: Correct.

Christina: But my point is just the relief and pure fun of that experience. His jokes were funny, but my smile the whole time was a reaction to the glee of being able to totally relax about autism, while talking about it openly.

Ken: Would I be correct by stating that for once, you were able to experience autism from the outside in rather than the inside out?

Christina: Yes! Good observation. For that 40 minutes, autism wasn’t something that I had to work at, or understand, or explain, or adjust to, but just appreciate—just enjoy Adam’s keen insights and his skill and success with his stand-up act.  Do you remember that one of the first things I said to you after the show was, “Could YOU do that?!… Please do that!”

Ken: I find that an awkward question. I could not do it the same way as him.

Christina: That will sound cold to some readers! But I know it isn’t to you–it’s neutral, unemotional data.

Ken: I realize how hard it is for you in social situations—and I am grateful that you are there, and not just bolting. You continue to persevere. Of course with Adam, we went to just listen, not dialogue. And that made it easy. Also, listening to another person on the spectrum gave me a message from a different point of view.

Christina: A message?

Ken: Each and every voice from a person impacted by autism is a new and different perspective and adds more to my understanding of autism.

Christina: So Adam’s show helped you understand yourself?

Ken: All information about autism, in its many different incarnation, helps me better understand myself and my place on the autism spectrum.

Christina: What was your biggest response by the end of his show? What feeling or what realization?

Ken: A very positive feeling because there was another person out there advocating and educating.

Christina: Me too. I felt that we were on the same team—him and us.

Ken: Agreed. However, one observation that I have made is that all of us—Adam, Temple Grandin, and the various autism groups we have connected with, are individual voices instead of a community of voices. Separately we’re out there advocating. We’re a bunch of individuals with the same goal—informing and educating others about the autistm spectrum. But we seem to be multiple voices operating individually rather than as a community.

Christina: I see. But “One Voice” isn’t what you’re getting at, I’m sure, right? Everyone does have unique experiences and perspectives…

Ken: Affirmative. There are many communities out there. For example the deaf have a community and a culture of their own. We, as people with autism, don’t seem to have that.

Christina: Right. And what could a community of people who are connected to autism—in any way— achieve that individuals or groups working alone cannot?

Ken: A community could find the middle ground between what seems to be polarized perspectives. We need to find the middle ground between various extreme views and opinions. It is a very complicated and stormy subject, so how do we calm the waters and move forward toward acceptance and understanding? We need to seek the messages that benefit the most people with the most accurate information and the widest possible collection of options. To do that, we need to find the middle ground.

Christina: Yes. We really don’t know much about autism yet. And I have a problem with the idea of polarities: positive and negative takes on autism. For me, for example, I carry both around every day all the time.

Ken: As do I. And within myself, because of that, I have found my middle ground. But my voice alone cannot speak for a community. It is a spectrum. I don’t have the answers, and I don’t think any of us will as long as we keep working alone.

Christina: Right. So, how can this “community” be accomplished, exactly?

Ken: A very good question. I’d like to hear from others out there about how. We need to figure it out together.  How do we dialogue and share rather than individually educate and inform?

Christina: Some kind of Autism Wiki? A massive chat room?

Ken: Two great ideas. We need as many as we can collect.

Christina: And then act.

Ken: Agreed. What appears to exist at the moment is many diverse parties who are self-advocating or using the term ‘self-advocate.’ In my view, the difficulty with the self-advocate stance is that we ourselves only have part of the information on autism and ourselves as individuals with autism. If we could form a community of advocates, I believe that we could not only effectively and expeditiously inform and educate more of the public, we could also do the same for ourselves.

Christina: Yes. And can you clarify to what end, in your view?

Ken: To further advance understanding, appreciation, and acceptance of people with differences.

Christina: Right. And I would add, celebrate and value what they have to offer. That’s far too rare.

Ken: I entirely concur with you on that.

Ken and Christina’s concluding message: If anyone sees value in the idea of forming a multi-voiced community of people who are autistic and who are close to autism, please let us know. Share your thoughts, ideas, and suggestions.

Next Post #22 ~ About the movie “Carrie Pilby” –the best autism film we’ve seen that never mentions autism.