“Small Stuff to Big Stuff… and Back Again.”

Diablogue #22

Christina and Ken on our annual pilgrimage to visit the Chinese Amur Maple trees along 97th Street, Edmonton.
Christina and Ken on our annual pilgrimage to visit the Chinese Amur Maple trees along 97th Street, Edmonton.

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?

“Autistic Community: Is It Possible?”

Diablogue #21

Adam, Christina & Ken at Adam's stand-up comedy show titled "Tale Of A Social Misfit" at the Edmonton Fringe Festival.
Adam, Christina & Ken at Adam’s stand-up comedy show titled “Tale Of A Social Misfit” at the Edmonton Fringe Festival.

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.

“A Monoblogue after Binge Sleeping by the One Who is Now Awake and Back”

Diablogue #20

"Christina and Ken overlooking the Bow river near the ancient Medicine Wheel Indigenous sacred site near Majorville in central Alberta."
Christina and Ken overlooking the Bow river near the ancient Medicine Wheel Indigenous sacred site near Majorville in central Alberta.

Helpful Hint: Pay heed to what your mind, body, soul and spirit are telling you. They know best what you need to keep you healthy and therefore happy. If they are telling you to binge sleep, for example, give in you will see and reap the benefits. Too often we ignore what our four aspects are telling us, thereby becoming exhausted, sick or both.

 

So, allow me (too) monoblogue:

First of all I would like to thank all of our blog viewers, visitors, and followers during my and Christina’s slips and misses in our blogging. Christina and I view this as our responsibility to possibly assist others. When we miss our commitment to this diablogue, it deeply disappoints both of us.

I would also like to thank Christina for understanding picking up the slack while I was down. I am fortunate to have a wife, friend, and partner like her. I believe that she is one in a trillion.

She is unconditionally supportive, curious, and smart. She should not underestimate herself or how essential she is to this diablogue. Christina arguably has and is performing at least half if not more of the research into autism. Christina is also responsible for at least half again, if not more, of the ideas, insights, information and work-arounds we discuss and implement. I do not believe that I could successfully or happily do life or the diablogue without her.

It was Christina who had the idea to seek out a diagnosis, and thank God that she did. Also she is the editor of the blog, taking my disjointed and disorganized thoughts and words and cobbling them into something that is understandable to autistics and non-autistics alike. Trust me when I say that this is no easy task. If you do not believe me, just ask her.

Last post Christina said, “And so tonight, Sunday, as Ken binge sleeps on, I’ll post this and he’ll read it when he awakes sometime Monday. I hope he approves of my ramblings!” Ramblings? Hardly. I believe Christina is incapable of rambling. She always has something of value to add. I too learned from her monoblogue.

For example, from her previous post, I learned about the natural pruning process in the non-autistic brain as opposed to the lack of pruning processes in the autistic brain. Please refer back to the images and descriptions in the previous post.

Also, I learned about how the autistic brain had received the same social stimulation as the non-autistic brain, but unlike the orderly firing of the latter, it “lit up like a Christmas tree.” Also, I read her comment about how some researchers dub autistic brains as “chatterbox brains” and “noisy brains.” As a refresher, please refer back to the images and descriptions in the previous post.

It has been stated that multi-tasking is extremely challenging, if not impossible, for autistics to perform. I think I now better understand why and how based on the information presented in Christina’s monoblogue.

I now theorize that quite the opposite is true—in fact we hyper-multi-task, leading to overload. The chatterbox brains and/or noisy brain description is quite apt. I now think because of the more abundant synapses at each spine and the extra wiring— not all of which is connected like the non-autistic brain—in fact contribute to what I call a hyper-multi-tasking brain. However, because of the lack of synapse pruning we have shortfalls in the filtering and executive functioning processes of the non-autistic brain.

I think our brains literally try to process everything simultaneously, leading to what I call hyper multi-tasking runaway. That now explains the pain, confusion, debilitation, and exhaustion that I feel. After prolong exposure of pain, confusion, debilitation, and exhaustion I will become overwhelmed and overloaded thus eventually and inevitably this will induce the inescapable unavoidable binge sleeps that Christina mentioned.

Christina, see what you have done for me here? You have provided information that I previously was unaware of. Christina, you are an indispensible partner. I know I do not tell you nearly enough. You are the essential other half of my whole. Thank you.

Christina you can speak for me anytime. I only hope that I am equal to the task when you are unable to diablogue with me.

That being said, back to what we both want and like and what I believe we do the best, and that is our diablogue. Next time we will both write, as usual.

~Ken (Binge slept like a baby, thank you and love you Christina)

Next post #21 ~ To be determined!

 

 

“Awesome Aspects of an Autistic/Non-Autistic Alliance PART 2”

Diablogue #9

Christina and Ken at Pyramid Lake, Jasper
Christina and Ken at Pyramid Lake, Jasper

Helpful Hint: Celebrate the diversity of the alliance and focus on its strengths.

 

So, let’s diablogue:

Ken: One of the great benefits for me of having you, a non-aspie partner, is that you have the natural gifts of sociability. Most of us on the spectrum have challenges in this area. Where other people have given up, you just keep giving.

Christina: Giving?

Ken: You accept me for who I am and how I am, and you end up being my defacto advocate and interpreter.

Christina: I get it. Just like how you are always there for me in some of the ways I need—like calming me down when I get emotionally overloaded, or always being willing to come rescue me if I’m lost on the road somewhere. You appreciate me being there for you to rescue you in social situations—like tapping you on the arm when you’re talking for too long.

Ken: Absolutely. You are always there to help me with my socials skills, even when it becomes difficult and repetitive.

Christina: It’s a balance.

Ken: It is my opinion that each of us has strengths that shore up the other’s challenges.

Christina: Right. Like when we were in East Germany and we couldn’t find an English speaker at a train station. You kept working to solve the problem—finally translating word by word for the ticket person using the iphone translation app—while I collapsed in a puddle on the bench, overwhelmed and exhausted.

Ken: Thank you for noticing that trait in me. That I never stop trying and I never try stopping.

Christina: You are driven to solve problems—it is a massive gift in our lives and one of the best things about being in mixed brain marriage! Hey that’s cool—mixed brain. Shakespeare invented snow broth, I can invent mixed brain.

Ken: Mixed brain? (laughter) I do not know about that. Your brain may be mixed; mine is just mixed up.

Christina: (laughing) Ummm… isn’t that self-deprecation or the deficit model of autism creeping in here…?

Ken: No. As we stated in last blog’s helpful hint, a sense of humour is essential. If you are going to poke fun, then you must only poke fun at yourself. It is a vital survival trait for me to be able to laugh good-heartedly at myself.

Christina: Yes. Oh, another thing that makes it great being with you is your high standards for doing things. Like when we dug out the basement and you were down there on your knees for hours grading the gravel to a 4° angle all around the house with a garden trowel. Nobody on the planet would care so much—but we have a dry basement. Your personal standards make for slow progess sometimes. But I never have to worry about you slapping something together like my mom said my dad used to do—and then whatever he built fell apart.

Ken: I build things to stay together while I fall apart.

Christina: (laughs)

Ken: So many people have mistaken that drive for perfectionism, and perhaps it might be. That being said, my Aspie brain has two ways of doing things. Doing them correctly or incorrectly. I am wired to do them correctly; I cannot tolerate being incorrect.

Christina: Yeah. I know about the grey thing—how there’s no middle ground for you in anything. So, an “OK” job in any area is a failure to you. Unless it’s MY ok job! (laughter)

Ken: Definitely. These are my standards alone. It is my personal measuring stick. One of the things I admire about other people, however, is when they can stop when the truth is that good is good enough.

Christina: It’s great that you never push your standards on me or anyone. But I love being able to walk away at midnight, bushed, knowing whatever it is you’re working on will be perfect in the morning—though you might be dead!

Ken: To conclude—and to hopefully to return to this topic in the future—I would like to point out how your optimistic view of the world balances my pragmatism. It gives us many happy and light moments. Your optimism is contagious, and I prefer to go through life upbeat rather than beaten up.

Christina: Me too. Ok. What should we talk about next time?

Ken: How about the survival trait of humour and Aspies’ broad sense and use of it?

Christina: Sounds good.

 

Next Post: Diablogue #10 – “Humour and Aspies’ unique senses of it.”