A Monoblogue on Binge Sleeping by the One Who is Awake…”

Diablogue #19

Ken and Christina at the spectacular Dinosaur Provincial Park in southern Alberta in midst of a Cree Elder guided U of A trek to indigenous sacred sites.
Ken and Christina at the spectacular Dinosaur Provincial Park in southern Alberta in midst of a Cree Elder guided U of A trek to indigenous sacred sites.

Helpful hint: Be careful what you assume about autism. Science and psychology know very little, really, and surprises are likely in store in the coming months and years.


So, allow me to monoblogue:

Yes, this is a departure from our usual diablogue. Early Sunday, Ken asked me to write this blog post myself as he binge sleeps. He can do nothing else at this moment. He has been sleeping on and off, in between required hours of work, eating, and essential family business, since returning from our profoundly affecting university organized and Elder-led indigenous sacred sites excursion. We’ve also recently experienced a rapid-fire series of life events, mostly positive but a few hard ones as well. He urged me, as he tucked himself into bed at 3 pm (likely for the night and for most of Monday as well) to explain his occassional absolute need to sleep however I saw fit. He asked this of me both to help others better understand the toll that busy “ordinary” life cognition takes on Aspies and to avoid missing another post—we missed last week due to the aforementioned trek.

So, today the page is mine. I will try to do well with it. However, rest assured that such monoblogues will appear only occasionally. We work best, in this blog, as a team. I think we have something unique to offer as we genuinely ponder, question, and laugh together about living as a mixed brain couple.

So, why does Ken have an urgent and recurring (about once every 2-3 months) need to binge sleep? One big reason is that he has a far, far noisier or busier brain than most of us, and when it over-fires during intense social experiences or for extended periods during rapid change and happenstance—either or good or bad—he MUST, that is MUST shut his brain off to recuperate, cope, and survive. He has done this all his life, but after his late diagnosis a few years ago, he finally understood more about why.

Let me paraphrase some of the latest autism science to explain this—though I will undoubtedly oversimplify things. Autism has been called one of the most complex conditions studied today; most agree that there is no single factor, such as a gene or environmental event, that determines it. Also, about 60 percent of autistics have significant cognitive disabilities, leaving 40 percent with average or above abilities. Nobody knows why some brains move in one direction and some in the other. Still, across all variants, there seem to be similarities in the kinds and locations of brain differences. This is why Ken can relate to, and often explain, infant and child autism responses and reactions; it’s because he experiences many of the same things—to different degrees.

Research shows that autistic brains are structurally, electrically, and chemically different from non-autistic brains. For example, the individual hemispheres are larger, thicker, and contain more folds, yet the corpus callosum, the tissue that connects the hemispheres, is smaller (or even absent in severe autism), thus reducing cross-hemisphere communication. Temple Grandin has described “grand trunk rail lines” of thinking activity travelling longitudinally back and forth along these “grand trunk rail lines” of the individual hemispheres of her brain rather than across to each hemisphere via the corpus callous using each of the two hemispheres simutaneously. This helps account for her, Ken’s, and other autistics’ astoundingly intense focus. When on task and “in the zone” they are undistracted by social phenomena such as wondering what’s for dinner, considering the appropriate response to a colleague’s email, or attending to what’s happening nearby. Ken calls it tunnel vision, but it seems to affect all his senses. This focus and clarity of mind is one of the key gifts that the high-functioning autistic brain offers the world—hence all those people posthumously diagnosed: Einstein, Shakespeare, and innumerable art, math, and technology geniuses who drove, and still drive, the world forward.

Science also suggests that autistic brains grow faster in early childhood but that the normal pruning (removal) of unused cells in areas that control cognitive and emotional processing does not occur. This means that there are literally more physical connections, more synapses, in an autistic brain. Way more. Look at this image from Columbia University Medical Center:


The image above on the right shows a brain cell from a non-autistic brain that has undergone normal pruning during childhood and adolescence. The image on the left is from an autistic brain; it has more abundant synapses at each spine, the result of less natural pruning.

And look at this image:


The “neurotypical” brain on the left has lit up in response to a complex but ordinary social situation such as interpreting multiple, rapid-fire verbal and body language interactions at a meeting or encountering a highly emotional and seemingly irrational adult. Specialised wiring in the (left) non-autistic brain efficiently sorts things out, leaving plenty of brain capacity to deal with the situation. In contrast, the autistic brain on the right has received the same social stimulation, but it lights up like a Christmas tree—there is much more wiring and not all of it is connected like the non-autistic brain. With all circuits firing in intense or unexpected social situations, it’s no wonder that Ken describes the feelings as painful, confusing, debilitating, and exhausting.

All these and other structural, electrical, and chemical brain differences prompt researchers to dub autistic brains as “chatterbox brains” and “noisy brains,” brains that takes in all available stimuli and have trouble filtering, sorting, and responding in socially appropriate ways. This helps us understand autistic peoples’ challenges with overstimulation from social situations, lights, sounds, voices, smells, and touch. In autistic kids, overstimulation episodes are often called “meltdowns”; they can manifest as screaming sessions, physical outbursts, or even self-harm. Ken also has meltdowns, but because of his particular autistic makeup and what he calls his age, stage, and experience in coping, they look a lot different.

For example, when over-stimulated suddenly or for too long, Ken can go quiet; make a quick exit to a less stimulating place; get a migraine; become unusually intense, verbose, or incoherent in his speech and hold eye contact for too long; forget people’s names; become unable to process simple input or instructions; slow down at green lights and go through red lights; or physically stumble. And finally, if the overstimulation is serious enough, Ken will seek out a bed and fall into a deep “shut down” sleep that can last for days with only the briefest of wakeful moments to drink and use the faculties. If I attempt to rouse him from such a sleep he will act as if in a stupor, and I can understand why. His brain must cool down. He needs shut down time to process all the stimulation and for some of it to bleed off in various ways.

Often, fascinatingly, he will eventually wake from a binge sleep episode having “dreamt solutions” to complex problems. And he’ll be refreshed and invigorated, ready to go at life again. But if the demands of work or personal life interrupt a critically needed binge sleep, his compulsion to rest will be prolonged and he will simply nap or nod off at every opportunity for days, weeks, or longer, getting his binge in pieces, but getting it nonetheless. Ken needs to binge sleep about every couple of months, depending on what’s going on in our lives.

When Ken and I encountered the foregoing and other brain images and explanations, we theorized that the extra synapses and “grand trunk processing railways” also contribute to some very positive attributes of high functioning (and savant) autism. Ken makes lightening fast and often unconventional connections when solving problems. He is a master problem solver and an innovative and divergent thinker—sometimes stunningly so. He’s also amazingly witty and funny, almost always having something smart, delightful, or insightful to say in response to, well, anything! We figure that his billions of extra synapses—those little arms reaching out and connecting diverse parts of his brain in net-like ways—are at least partly behind these gifts that solve real problems and make people laugh. If you’re curious to read more about this positive take on autism, I suggest you scan this thought-provoking article on how autism indeed remains in the pool of human diversity because it serves an evolutionary purpose, aiding mankind’s advancement: https://www.psychologytoday.com/blog/mom-am-i-disabled/201703/why-does-autism-still-exist

However, the rest of us are stuck with our ordinary, neatly pruned, but not nearly as creative or Google-like-quick thinking abilities! But we don’t melt down as often or in the same ways; we can handle all sorts of tricky social situations with little trouble—including, when necessary, ‘letting things go’; and if we binge sleep, it’s probably for other reasons.

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! Maybe we’ll get him to respond to—and in some way extend or spring from—this post in his own monoblogue in the next post. Perhaps he’ll add some useful data or correct something I might have assumed about him or conjectured about autism. Then it’ll be back to diabloguing the way we usually do.

~ Christina (Sleepless but not in Seattle)

Next post #20 ~ To be determined!


Synapses image from: https://www.autismspeaks.org/science/science-news/brain-study-finds-evidence-autism-involves-too-many-synapses?utm_medium=text-link&utm_content=Brain%20Study%20Finds%20Evidence%20that%20Autism%20Involves%20Too%20Many%20Synapses%20&utm_campaign=mostpopular

Busy brain image from: https://www.mumsnet.com/campaigns/this-is-my-child-autism-and-stress-research

Challenges with Aspies’ hardwired moral code and ethics

Diablogue #15: 

Christina and Ken teaming up to prepare the garden for planting.
Christina and Ken teaming up to prepare the garden for planting.


Helpful Hint:  Aspies should use discretion in taking things at face value.


So, let’s diablogue: 

Ken: I would like to talk about how I often fall victim to intentional or unintentional breaches of morals and ethics.

Christina: Ok.

Ken: I have gradually found out that my brain is hardwired with an inviolable moral code and set of ethics that others do not have to the same degree. That discovery was a sequence of real shocks and a harsh awakening. Because I am biologically predisposed to follow the code, I still have a hard time following my own helpful hint at the top of this post.

Christina: For example?

Ken: Intent. When a person tells me something, I take that at face value and believe that it is true.

Christina: But sometimes it’s not.

Ken: Correct. And it can be unintentional or intentional. For example, an incident occured during my employment as a journeyman electrician. My boss indicated that I would be moving to a foreman position. I took his word for it. After several months of not advancing, I approached him to enquire about the position. He denied that he ever made the offer and eventually they moved someone else into the position.

Christina: Rotten. But lots of people get jilted out of jobs like that.

Ken: Yes. However, they can pick up on some indicators about whether the person making the offer is genuine, or they will ask more questions immediately that will clarify the situation.

Christina: Got it. You believe the first things somebody says…

Ken: …because I cannot think in any duplicitous or hidden agenda or falsifying manners. I cannot imagine saying something to somebody and not meaning it, not following through. I cannot process that. Literally I do not understand. That is why it is extremely difficult in day-to-day interactions—in all interactions—to follow the helpful hint of using discretion in taking things at face value.

Christina: I see. Can you give another example?

Ken: Once while working at a computer and high tech shop, a customer came in with her child to have her personal laptop repaired. During the appointment, my observations indicated that it had likely been opened or repaired by an unauthorized person, so I asked her if that was the case. She looked me straight in the eye and said, “No, it has never been repaired by anyone else.” For the sake of brevity, her claim turned out to be untrue, yet to avoid being charged for repairs, she vehemently denied it—despite clear physical evidence to the contrary, and she escalated her claim three different times during the appointment to ever-increasing levels of management.

Christina: Wow. Brutal for you.

Ken: I was deeply shocked at how a young mother—who is supposed to be setting examples for her child—could make an initial false claim and then staunchly defend it. I could not process how she could state an untruth in the first place, and then found it even more impossible to process that she did it repeatedly in front of her child.

Christina: What happened to you—at that moment?

Ken: It made me nauseous and lightheaded. I got a headache.

Christina: And the thought of this incident still bothers you?

Ken: An accurate assessment. Because I cannot resolve it. I am still trying to figure it out. I am caught in a ‘do-while’ loop attempting—in vain— to process it because my brain does not allow me to think like that. I am completely unable to perform a moral or ethical violation similar to hers, especially in front of a child. On some occasions, if something like that happens and I have nothing else to distract me in the minutes or hours following, I cannot stop that do-while loop. My headaches will escalate into full blown, incapacitating migraines. At that point, the only exit, my only sanctuary, is to sleep.

Christina: Binge sleep. To process.

Ken: Affirmative. In some instances, the binge can persist for days.

Christina: Those can be strange social times for me, you know, suddenly alone and explaining to others that you are sleeping, yes, still sleeping! Most people don’t get it when I say you are in bed because of an upsetting incident at work or after a stressful but ordinary life event like…say… a major change in plans because stuff happens. But sudden shifts, especially in quick succession, rock your world; I know that now. And actually I have learned to relish most of those surprise alone times in the house. To enjoy them… sometimes I’ll watch a highly emotional film that I know you’d prefer not to watch, or I’ll go out and read at a cafe at suppertime. Adapting is critical. But back to most other people….Just like you can’t understand other peoples’ blasé reactions to life’s rocky moments, they can’t understand your extreme ones.

Ken: True.

Christina: I know it took years and a lot of reading and talking about autism for me to be OK with that aspect of your cognitive difference— your quickness to cognitive overload under certain stresses and your frequent need for extraordinary amounts of pass-out-dead-to-the-world sleep. And I think it’s taken years for you to fathom how I just go with the flow; water off a duck’s back when it comes to big or sudden shifts.

Ken: Affirmative. I am grateful that you understand. Many do not, I agree. I have gradually learned to accept your very different reactions and stresses, and I endeavour to adapt and adopt to your reasoning and methodologies.

Christina: We balance each other out, I think, on that score. Your two situation examples really illustrated the Theory of Mind issue we talked about last post. The challenges Aspies have with grasping—and accepting— that other people have very different thoughts, ideas, and beliefs.

Ken: That is correct. However, being with you has given me extremely valuable resources and insights to work around that which help me decrease the number of incidents and reduce their impact.

Christina: I think I urge you to be a little more aware of complexities. To ask more questions about things, right?

Ken: Indeed. And you and I develop scripts on how to do that and we practice them before certain situations, such as important meetings. The only way I can absorb these behaviours—to not take things at face value and to instead, question—is to repeat, repeat, repeat, repeat until they become part of my programming, part of my go-to self diagnostics and subroutines for my sanctuary and survival.

Christina: So sometimes, on your own, maybe using those scripts, you actually start asking questions instead of just accepting?

Ken: That is a correct assessment.

Christina: I’m curious… does that feel weird or unnatural for you? Doing it by script instead of, as I do, by impulse or intuition?

Ken: Just as with actual technology, I am always tweaking and making my programs more secure and safe.

Christina: Striking allusion! Secure and safe programs. It really fits how I believe you think.

Ken: That being said, much like in the actual tech world, I am always, as it were, one step behind the hackers.

Christina: So you mean that even with new automatic scripts….

Ken (interrupting) … people continue to find ways to hack morals and ethics, correct…

Christina (interrupting) …and you get hurt again. Taken advantage of.

Ken: Affirmative.

Christina: Seriously unfortunate. Ummm, we’ve run out of space. Gone over, really. Time to think about the next post.

Ken: How about we deal with multitasking?

Christina: A great topic. A particular area of strength—or vice?!— for me, I think! You, on the other hand, are free of its tyranny—though not from the problems of not being able to do it well.

Next post #16 ~ Executive functioning or prioritised multitasking

“Our Workarounds on Empathy and Theory of Mind”

Diablogue #14: 


Enjoying an outdoor snack in the Rockies.
Enjoying an outdoor snack in the Rockies.

We’re back! Apologies for missing our post last week due to circumstances beyond our control.

Helpful Hint:  Be direct. Ask for what you need. A person on the spectrum is not wired for subtlety, grey, or to take hints.


So, let’s diablogue: 

Christina: You sometimes experience challenges with being able to grasp or accept that others can think or behave very differently from you. This can cause you great angst. For example, you can’t fathom —or tolerate—liars, whereas as I can observe or experience someone lying and ‘imagine’ or ‘back-engineer’ a set of life experiences—or even a one-off situation— that might have caused that person to lie. This is related to the concept of “theory of mind.” Here’s what the Autism Research Institute says about it:

“Theory of mind refers to the notion that many autistic individuals do not understand that other people have their own plans, thoughts, and points of view. Furthermore, it appears that they have difficulty understanding other people’s beliefs, attitudes, and emotions.” https://www.autism.com/understanding_theoryofmind

Ken: I would have to say I agree with your statement, and that explanation is valid. It applies to me.

Christina: Let’s talk about empathy.

Ken: Empathy is an emotion. As an aspie, I have behaviours as workarounds for my challenges with emotions.

Christina: But you have emotions… you’re not a robot. In fact I’d say you often over-emote.

Ken: That is correct. However, depending upon the situation and the sensory and emotional confusion, they are often totally on or totally off.

Christina: Inappropriate? For the situation, you mean.

Ken: That is correct. Also, misapplied. For example, most people on the spectrum have binary thoughts. We have yes, no, right, wrong, up, down.

Christina: Yeah. That’s why you have such a hard time with schedules with hard deadlines.

Ken: Yes. A deadline is a promise. Either I keep it or I break it. I either succeed or I fail. And I cannot tolerate personal failure. From the point of the failure on, my day and my performance rapidly degrade.

Christina: No matter the degree of ‘failure’?

Ken: Correct. As I previously mentioned, there is no degree. Either suceed or fail.

Christina: So, let’s get back to the problem. You cannot empathize, but I need to you to. All the time. Daily. Big things, small things.

Ken: My workaround is to act kindly towards you. I draw on my deep moral compass of equity and equality.

Christina: So you don’t feel what I feel—which is “theory of mind”—you respond to the unfairness of the situation, of life. Or whatever.

Ken: Ultimately, I treat people—you—the way that I want to be treated.

Christina: With kindness?

Ken: To be acknowledged, validated, accepted, and understood. So I try to follow those internal guidelines and enact them externally. In other words, to treat others the way I want to be treated. I cannot violate my own ethical and moral codes

Christina: So your workaround for your inability to conventionally empathise is to draw on your deep moral codes.

Ken: Yes.

Christina: That’s a natural workaround.

Ken: Hardwired. Another example is that I cannot stand rudeness in others and I cannot tolerate it in myself—it is against my moral code.

Christina: Ok.

Ken: So, what is or are your workarounds for my challenges with empathy?

Christina: Logic. My logical brain reasons out what’s happening and why you cannot give me, in some moments, the emotionally-aware response I need. I still want it though—crave it, even, sometimes. I’m wired for it. So if the feeling is acute I’ll ask directly for what I need, like a hug or for you just to listen or let me be sad and not say anything or try to fix it.

Ken: And how do I function in those situations when you ask me?

Christina: You almost always instantly do what I ask. I can depend on it. Which reinforces my rather unusual—for me— behaviour, to ask directly for something another kind of man would sense and respond emotionally to—for me—at least to some degree. Lots of men are a bit thick about that stuff just because they’re men.

Ken: I do that because I know that I am black and white and don’t see the grey. So when you make the grey black and white, I then know what to do and how to do it and will walk through hell to give you what you need.

Christina: That shows me you are not a cruel, hard, or cold person by nature. You just have a kind of emotional blindness. Some other men might slough off my needs or trivialize them. Slam the door and go off for a beer (laughs). But you will move mountains to fill my smallest of needs once you know exactly what they are.

Ken: Yes. Because that is the right thing to do. You are doing many things for me, and this is the way I must reciprocate rather than be just a taker in the world. To carry my half of the relationship. It is my responsibility to look after your emotional wellbeing, though I am ill-equipped to do it sometimes. You help me to help us. Anything less would be unacceptable for me. You see value in this relationship and work very hard for its success. How can I in good conscience do any less?

Christina: That is worth a lot to me. It really is. I can make things clear; it’s not a lot to ask, really. I’m used to doing it by now. Well, maybe in the odd stubborn or weak moment I’ll choose to just be upset that you didn’t notice, quietly be sore about it. Resent it even, or feel sorry for myself. But that’s pretty rare now because I know how immature those reactions are. How unkind. You are a gargantuan model of kindness, and I feel crappy if I don’t reciprocate with kindness.  Overall, though, I’d say that I’ve learned to accept your package of actions—kindness, patience, and perseverance— in lieu of conventional empathy, or a so-called sensitive ear.

Ken: I see the value in this relationship is that you are one in a million. Where others in my life have given up or given in, you just keep giving. Because of that, we keep going the extra mile for each other. Our hearts demand it of us.

Christina: Yeah. What can I say to that?!


Next post #15 ~ Topic to be determined!

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

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”