Month: April 2017

“How has the Asperger’s Syndrome diagnosis helped?”

Published on by Ken2 Comments

Daiblogue #11

“To Diagnose or Not to Diagnose…that is the question!” (Acknowledgement to Shakespeare—who is also considered to have been on the spectrum)

 

Christina & Ken four-handing it on the family baby grand! piano.
Christina & Ken four-handing it on the family baby grand!

Helpful Hint: If you think you might be on the spectrum and it is in some way impacting your life or the people around you, talk to your GP for a referral to an autism specialist. Remember, it’s just information! Diagnosis or not—and what you do with a diagnosis— is a matter of personal choice. (Caveat: remember that serial misdiagnosis or incomplete diagnosis is common.)

Below is a link to a 5-minute multi-question informal (not diagnostic) survey that’s interesting and fun to do. Ken scored 9 out of 10 on the autism quotient (very autistic) while I scored 0! Whew! We can hang on to our blog title: “I am autistic, I’m not” (!)

http://www.channel4.com/programmes/how-autistic-are-you

 

So, let’s diablogue:

Ken: Getting a diagnosis was equal parts painful and enlightening. It simultaneously opened and closed doors. How did my diagnosis impact you?

Christina: In the same ways. But I think today, six years after your diagnosis and after almost 10 years of marriage, the diagnosis is what’s keeping us together.

Ken: Hmmmm. Perhaps. That being said, I think there are an equal number of different ways this diagnosis has affected each of us.

Christina: For sure. Knowing that you are physiologically different—that your brain is actually configured to work differently from mine—helps. I can now interpret things for what they really are, not what they seem to be. The diagnosis cleared up a lot of my misunderstandings of you.

Ken: The diagnosis has also helped me avoid misunderstanding and misinterpreting others. It has made me aware of the effects that autism has on people. This allows me to adjust my behaviour and find scripts and workarounds that make interactions better for everyone.

Christina: And knowledge about autism lets us have intellectual and practical conversations about what’s going on without getting tripped up by miscommunications—or emotions.

Ken: Affirmative.

Christina: So all this suggests that we wouldn’t have made it this far together without the diagnosis. Is that what we’re saying?

Ken: Perhaps.

Christina: It’s good that we went ahead with it, then, right?

Ken: Yes. However, for me, the decision to get a diagnosis was deeply personal and complicated. I calculated that the positives would outweigh the negatives.

Christina: That’s interesting. But for me, once the possibility was raised, it would have been hard for me to not get more information—a diagnosis. I’m kind of driven that way—maybe that’s my Aspie trait!

Ken: (laughs) Ultimately we decided together to move forward with getting a diagnosis. I wished to get it so that I, or shall I say we, could base our future on accurate and appropriate data. I speculated that the diagnosis would give us insights into my needs and abilities instead of us continuously struggling, leading to more misunderstanding and frustration on both our parts.

Christina: Totally. Before the diagnosis, I would endlessly hope that if I gave you enough clues you would figure out how to be sensitive to my feelings, to “tell” when I needed you close, needed my space, needed to cry and not talk …

Ken: (interrupting/interjecting) To me the signals for needing closeness or space appear to be exactly the same. Therefore, I do not know which way to proceed.

Christina: I know that now because of the diagnosis. So, I can let those desires go…to a degree, anyway. I still have the needs, but the rational part of my brain helps me adjust my expectations and my actions. “He’s autistic,” my brain tells me now. “Tell him exactly what you need. Or go talk with one of your women friends.”

Ken: And the diagnosis has given me the chance to adjust my behaviours to sometimes to catch on and give you what you need.

Christina: Absolutely. You meet way more of my needs now, and I hope I meet more of yours, like respecting your need for more sleep and time alone to recharge.  So… do you think all adults who feel that they might be on the spectrum should get a diagnosis?

Ken: Yes, in part. I believe that if more people with autism got diagnosed, it would increase awareness. It would be more difficult for the non-autistic world to overlook, ignore, and sometimes even shun us. We would be more visible.

Christina: Makes sense.

Ken: That being said, we have a few friends who may be on the spectrum or have family members who may be touched by autism. Some of them seem to function adequately without the need to know. As we stated previously, the decision to pursue a formal diagnosis is a complicated and deeply personal one. Each individual—in consultation with their families and significant others— need to weigh all of the factors before making the decision to pursue a diagnosis.

Christina: I agree. Both getting a diagnosis and living as autistic without a diagnosis are heavy, but different, loads.

 

Next Post: Diablogue #12 – “How do you know? ~ Ken’s 12 autism spectrum diagnostic criteria: Part 1”

“Humour and Aspies’ unique senses of it.”

Published on by Ken1 Comment

Diablogue #10 

For 30 years, Ken was the Klondike Kid at Klondike Days in Edmonton. He and Christina made the 19th century Western era the playful theme of their wedding. Humour, in all its guises, remains key to their relationship.

 Helpful Hint: If applied appropriately, humour is a great resource. Humour is a bonding agent that helps make and strengthen connections.

 

So, let’s diablogue:

Christina: Before we get into humour, let’s answer the question Mr. Asperger wrote as a ‘comment’ April 23: “How does the actual writing of your blog work? Is it one person recording the conversations? After all, it flows like a conversation that is verbal, but, I can’t imagine you both sitting down at the same time and recording one after the other.”

Ken: Perhaps you could explain.

Christina: Right. Well, I should say that we started out not knowing quite how to do this.

Ken: Yes. We were trying to achieve the “flow”, as Mr. Asperger says, of two people sitting having a conversation and the readers listening in. However, our challenge was to adapt that audio-format effect to print.

Christina: So we played around with a few options. I thought it would work to have two laptops, sit in a coffee shop, create a Google doc, and write at the same time through the internet into the same collaborative document.

Ken: That was our first attempt.

Christina: Yes, and the photo with the first blog showed us doing that.

Ken: However, due to my slow keyboarding speed, I could not get down what I was saying or thinking fast enough. I became frustrated, and we quickly realized we would have to modify our method.

Christina: Right. So then we actually tried to audio record our conversation, which Mr. Asperger thought we might be doing. We passed the iPhone back and forth as we talked. The idea was for me type out the transcript later.

Ken: That did not work because of ambient noise and volume control problems. It was very unnatural and interrupted the flow.

Christina: Yeah. So finally we fell upon the method we’re using now. We talk, and I type. It’s no problem because I type really fast. I’ve spent my life typing—first as a journalist, then in university.

Ken: I am hoping that this will be a temporary situation because I am now in a job that requires a great deal of typing. Therefore, by practise, my speed should increase.

Christina: (skeptical) I’ll believe that when I see it!

Ken: (laughs)

Christina: I hope that answers Mr. Asperger and anyone else’s curiosity on how we are doing this. If we change it up again, we’ll let you all know. Okay. Let’s get to today’s topic: humour.

Ken: Early in my life I discovered humour as a social survival tool.

Christina: Survival?

Ken: Yes. I always had the sense that I was different. As a child I didn’t know what, why, or how. And sometimes others would react to what I said or did in negative ways. Occasionally others would laugh at me.

Christina: You had to find a way to stop it.

Ken: Yes. The way I found was with humour. At first, it was unintentional, incidental, or accidental. I would say something and people would laugh. I observed that they were laughing at what I said. This shifted their laughter off of me directly and onto what I saying. I could control what I was saying.

Christina: Humour became a tool that you still use today.

Ken: Correct. Humour is one of my positive traits. Most people value it. It connects me with others and helps some people develop a positive option of me. It works, even when I am not working at it.

Christina: Ummm… but you know, it doesn’t always work for me. That knee-jerk aspect of it. Sometimes what comes out isn’t very funny–to me, anyway!

Ken: You are not alone. That being said, would you rather a grouch?

Christina: Nope. But do you realize we’ve barely said anything funny in this whole post on humour? That’s seriously sad!

Ken: That is because I have found that humour is a serious business.

Christina: Is that supposed to be funny? I can’t tell.

Ken: Viewer’s discretion.

Christina:  Arghh! One last thing. Humour is different I’m sure for every Aspie. Right?

Ken: True. If you have heard one funny Aspie, you have heard one funny Aspie.

Christina: We’ve only touched the surface of this topic. We’re going to have to come back to it another time.

Ken: We shall.

Christina: Lots of people have asked us if or how your formal autism diagnosis has helped us deal with its realities. I think that should be our next blog topic. Ok?

Ken: Yes.

Next Post: Diablogue #11 – “How has the Asperger’s Syndrome diagnosis helped?”

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

Published on by Ken1 Comment

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.”

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

Published on by Christina4 Comments

Diablogue #8

Christina and Ken enjoying a date night at Block 1912 on Whyte Ave. in Edmonton
Christina and Ken enjoying a date night at Block 1912 on Whyte Ave. in Edmonton

Helpful Hint: In any relationship, and especially one like ours, a sense of humour is essential. We must be able to laugh at ourselves and with others.

 

So, let’s diablogue:

Christina: A few people, one way or another, have suggested that the deficit model—the idea that autistic people have the problem and non-autistic people must naturally take the ‘helping’ role —is leaking into our blog. Like in the way we talk to each other. Or in the topics. It made me think. That’s why I wanted today’s topic: The awesomeness of being a couple like us.

Ken: I wholeheartedly agree. We need to address these points because they are very salient. That being said, I see a great deal—and perhaps more—benefits than deficits to our autistic/non-autistic relationship. Would you concur?

Christina: For sure. Let’s balance the scales. One way it’s awesome having you as a partner is how direct we can be with each other. We can say what we mean without game playing, innuendo, or hidden meanings. That makes our relationship upfront, transparent, and strong.

Ken: Agreed. However, in our interactions, others may see you as being pushy or bossy. As a matter of fact, when we first starting dating, you informed me, jokingly, “I can be strong minded about things!” At the time, I did not know why you said that, but I have never considered you pushy. Rather, you are direct.

Christina: (laughs) Works for me.

Ken: I do not have to guess at what you need or want. As for your “bossiness,” the reason that is an incorrect assessment by others is because if you tell me something that I really do not agree with, I stand my ground and state my opinion. And you will listen to it and we make a judgement based on that. A bossy person does not do that; they shout commands and expect to be obeyed.

Christina: Well, uh, who wouldn’t like being obeyed?! (laughter) But I think, umm…

Ken: (carrying on, unfazed) Being on the spectrum, two-way directness is essential to avoid making mistakes in the relationship because most of us do not infer, have difficulty intuiting, and refuse to guess. And we cannot decipher grey. So one of the things that attracted me to you is that you can handle direct and you can deliver direct—be direct. And that is such a relief. It is awesome.

Christina: Yup. Awesome. And it saves so much time. We can pack a lot into a conversation by cutting out social padding.

Ken: Yes. However, if need be—for example, if I disagree with something—then there is a discussion. You discuss and I listen. And like most men, I just do it or go along with it. Good men do not have to swing our clubs around and thump our chests to prove we are men. Most everyday things are small; it does not matter which way we do it—the results are the same. However, the critical decisions are never dictatorial; they are solved through a balanced alliance.

Christina: Right. Moving on… another awesome thing about being married to an Aspie is that your different viewpoint on things often makes me laugh. It’s delightful—even, or maybe especially— when it’s incidental or accidental. Your quirky ways of seeing things, your sharp right-hand turns in thinking, your automatic word-plays, crack me up—and they happen many times a day. I know that when I’m old you will always make me laugh. That’s precious.

Ken: Thank you, this is a good thing to know. The advantage for me is that it works and I do not have to work at it. It is easy for me, like autopilot, and you take it with ease. As a matter of fact, you seem to need it. It is important to be able to address your needs.

Christina: Absolutely. It’s stress relief. Thank you.

Ken: For both of us. Thank you.

Christina: Ok. Another awesome thing. You are hyper kind. I can absolutely count on that as your response to ANY situation. That makes me kinder every day out in the world, and it makes us kinder to each other, moment by moment. For me, our autistic/non-autistic alliance is like a twisting vine growing out of kindness-saturated soil. The Dalai Lama said that our only role on this planet is to help others along. To be kind. I believe it. I try to live it every day. Being in this relationship helps a lot.

Ken: For me, kindness and unkindness are behaviours. Perhaps the reason that we are kind is that we are often victims of unkindness, and so I never want to behave unkindly to others. We are compelled to be inclusive because we are excluded a lot. Being inclusive is usually interpreted by the world as kindness.

Christina: Yes.

Ken: What you do not realize is that in your reciprocal kindness, you are being inclusive instead of exclusive with me. There is mutual kindness; it is a balance.

Christina: Balance is good. Another example of the awesomeness of being with you is that I can always count on you to be there. In all ways. That matters. A lot.

Ken: You deserve no less. And you make me want to continue on this path.

Christina: We’re going to have to wrap this up.

Ken: Correct. However, to end, I wish to emphasize that what keeps us together, first and foremost, is our shared core values.

Christina: That’s what keeps all couples together—or what should. Everything else is small stuff.

Ken: There are, of course, many more awesome aspects to each of us. However, we are limited by space and time.

Christina: I think we need more blog time on this awesomeness track. Isn’t that awesome?!

Ken: Agreed. Shall we do Part 2 next post?

Christina: Absolutely.

 

Next post: Dialogue #9- “Awesome Aspects of an Autistic/Non-Autistic Alliance, Part 2”

“Spock Talk”

Published on by Ken5 Comments

Diablogue #7

Captain Christina and Mr. Ken on the bridge of the USS Aspberger's
Captain Christina and Mr. Ken on the bridge of the USS Aspberger’s
Captain’s Log Star Date April 02, 2017

Helpful Hint: All manners of language by all people should be accepted. We would do well to follow the lead of the Vulcan mantra:

“Infinite diversity in infinite combination.” ~ Mr. Spock

Mr. Spock with the Vulcan Salute and Vulcan greeting salutation.
Mr. Spock with the Vulcan greeting salute and Vulcan greeting salutation.

So, let’s diablogue:

Ken: In our previous posts we stated that we would attend to some comments concerning my use of formal language, which I refer to as Spock Talk.

Christina: Yes. It’s always been part of your charm.

Ken: Affirmative, and thank you.

Christina: I’ve liked the way you talk and write…the precision and elegance of it. But I know some people find it off-putting. And lately, in the blog, it seems to be getting more pronounced. My brother even asked, playfully, “is Ken trying to talk like Spock on purpose?”

Ken: I spoke like this before Spock. In September of 1966 I watched the premiere of Star Trek and heard Spock talk. I was fascinated and obsessively hooked. Finally, here was someone who spoke like I did… even used the same words such as ‘fascinating,’ ‘affirmative,’ ‘specify,’ ‘inquiry,’ I shall endeavour to do so’….

Christina: You love that kind of language.

Ken: Correct. I think formal language is beautiful— so accurate, so logical, like a piece of classical music. It is difficult if not impossible to mistake or infer the incorrect meaning with formal language.

Christina: Classical music?! So, Spock talk is… uh, Bach?! That’s…

Ken: (interjecting, laughing) That is brilliant. You could not have picked a better example. He is considered the most formal of classical music composers. And he is thought to have been on the spectrum….

Christina. (interjecting back) Well, it just rhymed with Spock. And Talk. So… what kind of music is casual language?

Ken: To me, informal language sounds like folk music and/or country music.  The trick for me has always been to use the appropriate music—language—for the situation.

Christina: Right. If you broke out a country guitar at the symphony you’d be chased out of the hall! I get it.

Ken: Correct. Ever since I could read, write, and speak, I stood out in some positive—but mostly negative ways. My classmates would tease me and make jokes about the way I talked—“Oh like at the snobby smarty pants.” Adults would say, “Oh that’s cute, look at the little professor.” However, it was only cute while I was a child.

Christina: So when you grew up, you started to self-censor.

Ken: True. I have literally had to spend my life pretending to not be who and how I am in order to avoid being ridiculed, abused, ostracized, tortured, and persecuted.

Christina: Those are strong words.

Ken: Nevertheless, they are the truth. In spite of what some people may assume, it has never been, is not now, nor will it ever be my conscious thought to be arrogant, superior, a snob or whatever traits they attribute to me. The language I use in this blog is honestly, sincerely, and genuinely the real me.

Christina: You’ve….

Ken: …started to let my guard down…

Christina: Yeah. Although not everyone on the spectrum talks like that.

Ken: Correct. Some are non-verbal, some speak only casual language, some speak or wish to speak as formally as I do, and yet others speak much more formally—yet do not suffer. This is why it is called the Autism Spectrum. To quote Dr. Stephen Shore, “If you’ve met one person with autism, you’ve met one person with autism.”

Christina: Right. Well, for most of us, though, Spock talk belongs to Spock.

Ken: And to me, I would add, and possibly to others. I am in no way trying to suggest that society should change its use of casual language to fit me. Nor do I in any way intend to persecute the persecutors, as casual language is beautiful in its own right. It is not only necessary, it is essential to and for creation, innovation, and evolution. All that I am asking for is reciprocity, validation, acknowledgement, appreciation, and understanding that my formal language is no less beautiful and essential. It is like Aspies ourselves, neither inferior nor superior, just different.

Christina: Everybody equal.

Ken: Affirmative.

Christina: Well, I love diversity. Your Spock Talk works just fine for me. Still charming…so… Spock on! Live long and….

Ken: Proper.

Christina: Oooooh! Nooooo! That’s Prosper.

Mr. Spock wearing the Vulcan I.D.I.C. and performing the Vulcan salute.
Mr. Spock wearing the Vulcan I.D.I.C. and performing the Vulcan salute.
Thank you, Leonard Nimoy, March 26, 1931 – February 27, 2015; the actor who portrayed Mr. Spock
Gene Roddenberry August 19, 1921 – October 24, 1991 creator of Star Trek.
Thank you, Gene Roddenberry, August 19, 1921 – October 24, 1991 creator of Star Trek.

Note:

Gene Roddenberry was considered to be on the spectrum. It is thought that he based the character Mr. Spock on himself.

Mr. Spock exhibits all the traits of an Asperger’s autistic.

Leonard Nimoy is also thought to be on the spectrum.

Next post: Dialogue #8- “How being an Aspie/non-Aspie couple is awesome”