“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!

 

 

“Unintentional Bias Against, and Torment of, Aspies”

Diablogue #18

Christina and Ken outside the indigenous tipi during Canada Day July 1 at the Alberta Legislature grounds. Canada=150 years. Indigenous peoples = 15,000 years. New chapter ahead.
Christina and Ken outside the Indigenous tipi during Canada Day July 1 at the Alberta Legislature grounds. Canada=150 years. Indigenous peoples = 15,000 years. New chapter ahead.

Helpful hint: Be generous of heart to those who unknowingly torment you. They know not what they do. Keep working to forgive and educate. Education and connection are the death of ignorance and torment.

 

So, let’s diablogue:

Christina: This is a touchy topic.

Ken: That is correct. And perhaps somewhat controversial.

Christina: Controversial?

Ken: Controversial in that the majority of the torment of Aspies is unconscious and thereby unintentional.

Christina: You mean that people don’t like to hear that they are doing it… or they won’t really believe it?

Ken: Both.

Christina: Example?

Ken: People keep unwritten scorecards on each other. When I start a friendship, or a job, things are equal. Then I start to question things. Or ask for things I need. They start to judge me and see me as annoying, threatening to their position or authority, intense, overbearing, or just plain odd—but not in a good way. I will start to lose points on their scorecard and become lesser in their eyes.

Christina: They stop picking you for the team.

Ken: Fall out of favour. Consider me last when they have tickets to give away. Start subconsciously avoiding me and stop asking for my opinion or advice. Exclude me from the loop. Sabotage my efforts. Try to discredit me. Pass me over for promotions.

Christina: This happens lots then.

Ken: These kinds of reactions and behaviours have happened multiple times in multiple different scenarios for as long as I can recall.

Christina: Slow, steady, disconnection from people.

Ken: In these instances I redouble my efforts and try harder to regain points and return to their favour.

Christina: Does it work?

Ken: Often it has the reverse effect. In trying to even the scorecard, I overcompensate.

Christina: They think you are showing off or climbing the ladder or one-upping them— or something else that’s not true.

Ken: Correct. Thereby, instead of gaining back the points, I lose even more.

Christina: And over time…

Ken: I lose friends, colleagues will interact with me less, and I lose employment.

Christina: Serious.

Ken: In my view, because of who I am, I have to work twice as hard to get half as far ahead. And the end result is that I work twice as hard and fall twice as far behind.

Christina: I can’t even follow that! But it sounds destructive.

Ken: It becomes immoral and unethical.

Christina: You mean others’ behaviours towards you?

Ken: Correct.

Christina: But they don’t know they’re doing it, usually. I think it goes back to the natural tribal response of disassociating with others who are not like us in some way. In your case it’s very subtle. Social differences, multiple small social infractions—some even too small to notice. They pile up and cause a natural human aversion response. 

Ken: Eloquently put. I could not have said it any better. In most instances, it is never overt, mean-spirited, or hateful. Your word subtle captures it perfectly. I would only add two words to that, which are “unconscious and unintentional”—very few people directly target me. It just happens.

Christina: So my question to you is, is it really unethical and immoral if it’s unconscious?

Ken: Yes. Because the outcome is the same. The truth is that ethics and morals have been breached. I’m talking about fairness, equality, and inclusion of all.

Christina: No matter what the cognitive diversity—or any diversity.

Ken: Absolutely.

Christina: Do you ever just tell people what’s actually going on—as you see it?

Ken: Yes, when I become overwhelmed and it has become the straw that has broken the camel’s back.

Christina: How does it go over?

Ken: Often not well. Most believe themselves to be, and genuinely are, quite ethical and moral. So, when I inform them that they are behaving in a less than ethical or moral manner, it shocks them. First they don’t believe it, then they become hurt, then they deny it, and then they become defensive.

Christina: And finally…

Ken: This is when the truly unethical and immoral treatment surfaces. They ostracise me or strike out in some of the ways I previously mentioned.

Christina: That’s the torture in our headline.

Ken: Or rather, torment. Torture is a bit strong.

Christina: Although when I see the effects—your anxiety and depression and self-flagellation, I would say it’s not too strong.

Ken: Perhaps.

Christina: Low self-esteem is chronic in Aspies.

Ken: Correct. However, this phenomenon is just one of many causes.

Christina: Ok. I really think we need to lighten up for next blog!

Ken: Perhaps we should talk about my odd and broad sense of humour.

Christina: Bad jokes, puns, and incessant wordplay included? Sounds funny!

 

Next post #19 ~ “Aspies’ Odd and Broad Sense of Humour”

“An Aspie’s Confounding Contradictions” 

Diablogue #17

Christina and Ken enjoy an outdoor Sunday brunch at Artisan restaurant on Whyte Avenue in Edmonton.
Christina and Ken enjoy an outdoor Sunday brunch at Artisan restaurant on Whyte Avenue in Edmonton.

Our intent is to publish once a week. However, sometimes too much is happening and Ken becomes overwhelmed. He needs to binge sleep instead of write. Our apologies. We will always try meet our commitment.

Helpful Hint: Contradictions are inevitable. However, with patience, perseverance, and help, there are ways to continually minimize their impact.

 

So, let’s diablogue:

Ken: I realize that contradictions are an inevitable part of my life. I continue to try to implement my own helpful hint. People cannot see the toll it takes on me to reconcile or explain the contradictions to people. It is exhausting, and sometimes it cannot be achieved. I do not know why most of them occur. But I am constantly looping them in my brain to try to find the reasons.

Christina: Like your extremely strong vocabulary, yet extremely weak spelling.

Ken: I first noticed that in school. One of the thrills of my childhood was closing my eyes, randomly opening the dictionary, and dropping my finger on a word. That was the word of the day for me. This was one way I attained my high vocabulary—through my fascination with words. However, in spelling tests or spelling bees, I usually could not spell the big words that I could speak, understand, and use in sentences.

Christina: And that’s still there today. Just today you wrote an email to me with ‘to’ in place of ‘two’ several times. You spell the way things sound—despite multiple exposures, you know, when you read, see signs, all the language everywhere—and you remember everything you see. So the spelling quirk is amazing to me.

Ken: Indeed this contradiction is still alive and well.

Christina: And you can’t explain it?

Ken: That is correct. Thank God for Spellchecker and Grammar checker.

Christina: Another contradiction is how you keep your workspaces at work so tidy, organized, and dust free. Yet your home workspace is a mess.

Ken: That is  true. The only theory that I can come up with is that I need to be organized in order to be focussed and efficient. I am not subject to the distraction of looking for my tools if it is organized. I keep it dust free for obvious reasons. There are many customers’ devices there, and I am not alone in that work environment. Regarding the difference at home, when my work day is over, I have nothing left in me to organize and clean. I just want to rest and refresh.

Christina: For the past 10 years? No chance to clean your space?

Ken: Then there are other things to do. It falls off the radar. Not a priority.

Christina: Well, I hope we can finally completely clean up your home office this summer and that you will keep it that way—now that things are settling at work and home.

Ken: That is indeed my desire also.  Speaking of my workspace, another contradiction I know I am guilty of is that I am generous and yet also extremely territorial. I surmise that is because generosity is by choice—I am aware when I loan something to someone. However, when someone takes something without asking, or without my knowledge, and I discover it gone, the demon of territorialism rears its ugly head.

Christina: And you don’t like being like that.

Ken: That is absolutely correct.

Christina: Like the time I went into your office when you weren’t home and took a power bar for my daughter. No big deal, I thought.

Ken: Later I discovered it was missing and asked if you have seen it. You told me you what you had done with it and I immediately went into internal orbit.

Christina: Not on the outside.

Ken: As often happens, there is an internal rage, but my immediate counter action is to exert extreme control, I do not let it out. Because I realize that this is ok, normal behaviour for nonspectrum people.

Christina: I was shocked when you told me how you had felt about that incident. How upset you were over a $3 power bar from the dollar store. Like, who cares?!

Ken: I was shocked also. And extremely embarrassed. Because of that incident and how close I came to losing control, I developed a workaround.

Christina: What is it?

Ken: I inform people of my peculiarly about borrowing things. I say, “You are free to use anything that I have as long as you ask me first, and when you are finished with it, you put it back exactly where you got it from.” Therefore, each of us is aware, and neither one of us ends up shocked, or shocked by the other’s reaction.

Christina: Well, after you explained this reality, I changed my behaviour too. I always tell you now, and no problem! …I think I told you that when we were thinking of this topic I went online and searched Asperger contradictions. Yours seem to be pretty common. It looks like lots of Aspies feel like walking contradictions. They mentioned things like being so kind in the world yet inadvertently unkind to individuals, finding it hard to start jobs then not being able to stop working, and hating interruptions yet always interrupting.

Ken: I find it reassuring to realize that I am not the only one struggling with these issues. Reading some of the other sites will give me new information and tools.

Christina: Ok, what next week?

Ken: Next week it will be the unintentional and hidden bias and torture by non-spectrum people towards those on the spectrum.

 

Next post #18 ~ Unintentional and hidden bias and torture of Aspies

“Executive functioning or prioritized multitasking”

Diablogue #16

Christina and Ken writing Blog 16 at their neighbourhood Tim Hortons cafe!
Christina and Ken writing Blog 16 at their neighbourhood Tim Hortons cafe!

Helpful Hint: Always attempt to work to your strengths and strengthen your weaknesses.

 

So, let’s diablogue:

Christina: So, what’s executive functioning? I know it happens in the frontal cortex, which fully develops in the brain around age 25. That’s why teenagers are such trouble—they have urges and ideas and power but no assimilation in their thinking—they can’t make good choices.

Ken: One of the definitions of multitasking is prioritization. For example, to me, each receives equal importance. None are higher than the others. The most important task is the one I am looking at that moment. If somebody introduces another task, it’s a like a Lazy Susan, the new task becomes the priority. If you do this again, it repeats. That for me, and for  other Aspies, is where we have trouble with prioritisation.

Christina: Yes. But that trait can be handy for me! If I want you to change tasks, all I have to do is dangle the preferred one in front of your eyes, and like a bird attracted by something shiny, you’ll go to it! So what about multitasking?

Ken: Challenges with multitasking are directly related to the ability or lack thereof to prioritize. We can, in fact, multitask in a linear fashion, unlike non-Aspies who tend to multitask in a lateral fashion.

Christina: You can fix a whole bunch of computers all at once at lightening speed—I’ve seen it—but if I break in and ask you an unrelated question it messes you right up. You have trouble getting going again.

Ken: Correct. I have to very quickly go through the steps from step one to determine where I left off in order to continue. Which is why it is physiologically uncomfortable and jarring. An interruption feels like a car travelling at 60 miles per hour punching into a brick wall.

Christina: But in the computer example, the computers are doing different things. There are different problems… I don’t get it exactly….

Ken: It’s a like a team sport and I’m the coach. Everybody is playing the same game, but they have different moves, different actions, and require different input.

Christina: So how does the challenge with multitasking affect an Aspie’s life?

Ken: Our challenges with prioritization that can make it difficult to gain employment and maintain employment. And, if one is fortunate enough to be employed, then the challenge causes a great deal of angst. That is because the world wants everyone to multitask in everything all of the time.

Christina: That’s probably true. Although I never really notice it. So what is lateral multitasking? The regular kind—like what I do?

Ken: There is nothing regular about what you do! (Both laugh) You linearly and laterally multitask, interchangeably all at the same time, and I am jealous.

Christina: That gave me a headache to hear!

Ken: Lateral multitasking is like a foreman’s ability to meet with the owner, meet with the contractors, assign work to the employers, consult with the engineers, look after scheduling and payroll, and make sure parts and inventory are taken care of. All at the same time—switching them up back and forth all day. And they never have to retrace their steps.

Christina: Yeah. I do that. No problem. It’s the mark of an overachieving woman, methinks! (laughs).

Ken: On the other hand, for Aspies, not being able to multitask can be a strength. It allows extreme focus and attention to detail. It allows us to see detail and find solutions that may be overlooked by non-Aspies.

Christina: Right.

Ken: One detriment to that super focus, though, is lack of time awareness.

Christina: You mean….

Ken: ….when I am fixing a computer, I will become so focused on the task I lose all track of time.

Christina: Yeah.

Ken: Another contributor to my lack of time awareness is my absolute obsession to fix the computer right the first time. Dogged perseverance will not let me stop until I reach this goal, often pushing me over the expected timeline—whether my own or someone else’s. This leads to scheduling and organization challenges.

Christina: I’ve seen that a lot.

Ken: However, I never have to do the same repair twice. Multitaskers have the ability to manage several customers at the same time. On the other hand, they have a lot more returns—customers who come back with the same issues on their computer.

Christina: You’re famous for that: fixing it right. Staying with it until it’s fixed right. In our family, anyway!

Ken: Unfortunately yes (laughs). This leads to extremely high personal standards that even I cannot always attain.

Christina: It’s a shame because anything less than perfect…

Ken: ….hurts, I mean physiologically hurts.

Christina: Yeah. But what I was going to say is that to you, anything less than perfect is not good enough. When really it is. You can’t process “it’s good enough.”

Ken: Correct. I would say, it is just not good enough. This reminds me of a very poignant quote from an important late mentor of mine, Dr. Jack Kendal. He stated: “You can do a few things very well, or many things poorly.” And that has resonated with me ever since.

Christina: That explains Aspies.

Ken: Affirmative.

Christina: We know that one of the best workarounds for problems with prioritizing and multitasking is the pilot’s checklist that Temple Grandin talked about—and we reported on it in the 6th blog I think.

Ken: Yes. As you do the steps, 1., 2, 3, etcetera, you put a check in the box. Therefore, you don’t have to loop all the way back to the beginning when you get interrupted. You simply look at the checklist, see what numbered box you have not checked off, and proceed.

Christina: Ok. What should we talk about next week?

Ken: Contradictions, such as high vocabulary and poor spelling.

 

Next post #17 ~ “An Aspie’s Confounding Contradictions” 

 

 

“Ken’s 12 Autism Spectrum Diagnostic Criteria: Part 2”: “Addendum and Reset”

Diablogue #13

 

Christina and Ken discovering a fun namesake licence plate on somebody else’s vehicle in Drumheller, Alberta.

Helpful Hint: Always endeavor to keep things equal. Work together and continue adopting and adapting 50-50.

 

So, Let’s Diablogue:

 Ken: I’d like to make an addendum to the previous blog about being compelled to say the truth and always self-checking to avoid social mishaps. Most of my workarounds involve self-talk in the form of axioms continuously repeated as self-mantras. My over-arching social workaround in many situations—at least the one that works for me—is this: “There is the truth, and then there is the ‘right’ answer for the situation.” The trick is to know which is which and when to apply each.

Christina: Yes. And that’s hard to know—even I struggle sometimes.

Ken: Before we go on with this post, I wish to explain how we will continue with the blog. My sense in this diablogue so far is that I am falling victim to my Aspie nature of information dissemination and data regurgitation.

Christina: Well, if there was any falling, I fell too! My Aspie trait? (laughs). What do you mean, exactly?

Ken: In the past two posts we have offered a fun test for Aspergers, which I am glad we included. But that led me a little off course in just talking about the diagnostic criteria, which for many people is redundant information.

Christina: And which they can find on the net.

Ken: Correct. We need to return more particularly to demonstrating our very real yet rewarding struggle of adapting to each other and creating new workarounds, constantly reinventing our relationship.

Christina: It’s true. I feel we’ve drifted a little. A part of me likes data too. But I think the strength of this blog is the messy, personal, relational work we do. 

Ken: Absolutely. It is a never-ending process. We also need to address a recent salient comment. We asked several specialists for feedback on the blog, and one replied. He applauded us for our “good intentions by trying to help others.” However, he urged us to avoid a tendency to define the relationship in terms of “one person as having a disability or problem and the other not.” He observed that in some of our blogs, we focus on an Aspie difference, “presenting it as a failure in social interaction and emotional understanding, and the other person trying to understand that deficit and provide corrective strategies.”

Christina: Right. That raised red flags for him about us as a couple, signaling a power imbalance. What happens, he said, is that “one person has the power or authority of knowing the right social behavior and understanding emotions, and the other does not.” That’s a smart observation. It’s an easy mindset to slip into, especially since society at large considers autism to be all–or mostly — negative.  The medical model of needing to ‘fix’ it, and until it’s fixed, the job of us ‘normal’ folk isn’t done. It’s kind of like what  I experienced with my middle son and his deafness. I worked hard to avoid him feeling handicapped. It took a lot of non-debilitating attitudes, words, and actions. It’s sort of the same thing here.

Ken: I wholeheartedly agree. We need to show how each of us has workarounds, not just me. That we are both creating them.

Christina: That’s the truth.

Ken: Therefore, we need to have more of a balanced conversation that is equally relevant and relatable to readers who are both autistic and non-autistic partners. We need to have equal voice because it is truly a 50-50 relationship.

Christina: And that balance is what keeps it alive. And thriving. In my opinion.

Ken: We need to demonstrate the process of encountering a problem and creating and utilizing a workaround that works. Also, to constantly keep tweaking the ones that do not work until they do. We are equally adopting, adapting, and contributing corrective strategies, and we are equally committed to doing so.

Christina: I think this change will mean that we’ll say a lot more about fewer things. Go deeper instead of skipping along from one thing to the next.

Ken: Agreed. We will continue to address the topics from the previous post—autism traits— but in a more personal and equal way. We will focus on how each of us is affected and how each of us has adapted by working together. This will bring us back to our original vision for the blog, for it to be, in part, cathartic. We wanted to use this as a voyage of discovery. To learn and to share.

Christina: I do think we’ve being doing some of that. But it’ll be good to refocus and do it more and better.

 

Diablogue #14: ~ “Both of our workarounds in managing the autism trait of difficulty with empathy and theory of mind.”

“How do you know? ~ Ken’s 12 autism spectrum diagnostic criteria: Part 1”

Diablogue #12

 

Ken and Christina overlooking a point near Ken’s birthplace of Wayne near Drumheller, Alberta.

 

Helpful Hint: “If you’ve met one person with autism, you’ve met one person with autism.” ~ Dr. Stephan Shore. There are multiple criteria, each with multiple degrees, that can lead to an infinite number of unique and individual diagnoses.

 

So, let’s diablogue:

Ken: The following list is a excerpt of a much larger list of criteria on which I was surveyed. To mention and address all of the criteria would be exhaustive and prohibitive and would require a blog of its own. From this list I recall from my diagnosis, we will choose 12 to discuss.

  1. Motor skills—lurching gait, morning awkwardness
  2. Speaking cadence—robotic, monotone, repetitive
  3. Difficulty with conversational audio clues— tone of voice
  4. Above average to high IQ
  5. Difficulty with executive functioning—multi-tasking
  6. Lack of reciprocity in communication—doing all the talking
  7. Intense focus—ability to stay on task
  8. Difficulty making transitions
  9. A need for rigid schedules and routines
  10. Hyper sensitive to sensory stimuli—sight, sound, touch, taste, smell
  11. Eidetic memory—photographic recall
  12. Eye contact—difficulty with social applications
  13. Difficulty differentiating facial expressions and body language
  14. High pattern recognition—visual and auditory
  15. Social connections—challenges with making and maintaining
  16. Strong sense of justice —rigid, hard-wired moral compass
  17. Strong sense of loyalty
  18. Difficulty with empathy or theory of mind—understanding and sharing others’ feelings
  19. Difficulty with emotions—understanding and expressing
  20. Extreme difficulty with ambiguity—black and white thinking
  21. Extremely high vocabulary and extremely poor spelling
  22. Literal thinking—understanding words literally
  23. Inability to infer or guess
  24. Compulsive word play and puns—humour, wit, playfulness
  25. Socially inappropriate bluntness and truth saying                                                     There are more….

Christina: Wow. Big list.

Ken: True. Yet not definitive.

Christina: Do all autistics show all those traits?

Ken: No. They can have more or less—but according to my specialists, at least 12. Some say all people have at least one or two autistic traits. My diagnosticians told me that it’s not clearly defined, but if I met at least 12 of the multiple criteria I would be considered to be on the autism spectrum.

Christina: Only 12? (laughs) I think you’ve got all of the ones on your list!

Ken: Correct. And more that I cannot immediately recall.

Christina: Ok. So let’s talk about your “magic 12.”

Ken: Those would be the ones that most significantly impact our relationship.

Christina: Ladies’ pick first: Your tendency—which you almost always stuff back now, to be blunt. To say what you really think when it could hurt people’s feelings.

Ken: Correct. In social interactions, the first thing that I think and the first thing I actually say are different…

Christina: (interjecting) But, that’s the same for me… for a lot of people. We don’t blurt out what we are actually thinking either.

Ken: However, I have observed that it is a much more natural and automatic process for non-autistic people. It appears as if you do not think about it, you just do it—you say the appropriate thing. The difference with me is that, good, bad, or ugly, the truth is the truth, and I have a strong urge to state it. For me, I have an uncomfortable physiological response from having to withhold the truth…

Christina (interrupting) What does it feel like?

Ken: I feel a phantom pain of impact, like running into a brick wall. My breath catches, my body heats up, and my heartbeat increases.

Christina: Sounds like an anxiety attack.

Ken: Precisely. It takes everything I have to not act upon my first impulse.

Christina: Every time?

Ken: Every time. To varying degrees.

Christina: Which explains why socializing—even casual chitchat— drains you.

Ken: Absolutely. It is because of that physical reaction. My first impulse is always to speak the truth…

Christina: like, umm… ‘Why do you want to know that?’ or “You have a lot of body piercings,” or “that is not relevant.” …

Ken: (interjecting) Or, “that is not logical; it doesn’t make sense.” And yes, unfortunately you are correct. I used to actually blurt things like that. And I never understood why people reacted the way that they did because it was simply the truth, whether people wanted to acknowledge it or not.

Christina: Now you know that being blunt turns out badly.

Ken: Definitely. I have developed workarounds such as re-wording, softening, or suppressing my thoughts.

Christina: Right. In fact, you are outwardly extremely social! You can talk at length on any topic with anyone. That was, and still is, one of your best qualities! And since I’ve met you and we’ve been working on reciprocity, you are getting to be an even more interesting and enjoyable conversationalist. 

Ken: True. However, that is a learned behaviour which I can manage well only under low stress conditions. I must maintain a diligent awareness and rigid control in order to not trip up or expose myself.

Christina: I regret that it’s so hard on you. And I understand that’s part of the reason you need to rest, be alone, and sleep a lot. And we need to limit our social activities or sometimes separate—I go, you don’t—which is ok with me. So… we’d better get another diagnostic criteria in here or we’ll have a 24-part series! How about your eidetic memory—that’s such a cool word and an even cooler thing.

Ken: Alright. Everything I hear, see, and read, sticks. Like little videos in my brain. Non-spectrum people often have difficulty with this kind of memory. That always puzzled me because for me, it takes effort to forget.

Christina: Whereas I forget everything, immediately, all the time. It’s a pain in the neck. It’s exhausting, trying to remember things.

Ken: Your ease in social situations helps me avoid discomfort and exhaustion, and my eidetic memory does the same for you.

Christina: Beautiful! Let’s start with a third criterion next post, and try to get through more of them.

Ken: Agreed.

 

Next Post: Diablogue #13 ~ “How do you know? ~ Ken’s 12 autism spectrum diagnostic criteria: Part 2”