Tendril Theory

Autism, Neurodiversity

I don’t always do crossover posts between this blog and Human Illustrations, but when I do, it’s because I drew a thing that is going viral.

I drew and shared this comic on Saturday, posted to Facebook and Tumblr. It was by far the most shared post I’ve ever created on Facebook and may edge out the Boycott Autism Speaks cartoon I posted on Tumblr.

I came up with “Tendril Theory” when someone in a support group asked for a good way to explain executive function, specifically the challenge of being interrupted or having to switch tasks suddenly, to a neurotypical person. The image and words came to me all at once. It took me a few weeks to sit down and draw it.

I think the reason this resonates with so many people is that a lot of different kinds of brains work in a similar way – not only for autistic people, but also people with ADHD, and neurotypical introverts. So if this doesn’t describe you, it probably describes someone you know.

TendrilTheory

*Image is a comic titled “Why it’s hard to switch tasks (Let’s call it Tendril Theory).” Simple line drawings illustrate the following text:

When I’m focused on something / My mind sends out a million tendrils of thought / Expands into all of the thoughts & feelings / When I need to switch tasks / I must retract all of the tendrils of my mind / This takes some time / Eventually I can shift to the new task / But when I am interrupted or must switch abruptly / It feels like all of the tendrils are being ripped out / That’s why I don’t react well / Please just give me time / To switch tasks when I’m ready.

Spoons, Splines, Executive Function

Autism, Identity, Neurodiversity

I’ve been wanting to write a blog post about executive function for several weeks. The funny thing is, compiling the information and the writing such a post requires significant executive functioning effort, and I haven’t been able to muster it. Fitting!

Executive function (EF) is hard to explain in a simple way because it does so many things. Some call it the command center of the brain – it is responsible for things like decision making, planning, problem solving, attention, working memory, verbal reasoning, transitioning, time management, and more.

Take for example one ordinary task that many people do almost every day: making dinner. There are so many executive functioning tasks just in making a simple dinner it’s difficult to list them all, but they would include: deciding what to prepare, determining which ingredients are needed, locating them all, calculating how much time each component (also the entire meal) will take to make, measuring or chopping ingredients, doing everything in the proper order, paying attention so that nothing is underdone or overcooked, dealing with distractions, serving appropriate portion sizes, locating appropriate plates/bowls/flatware….

Do you still have the energy to eat?

Cooking dinner is a relatable example, which is why I used it – lots of neurotypical people find preparing a meal to be a bit taxing, at least sometimes. But if you are neurotypical, try to imagine if nearly everything about your day was that labor-intensive for your brain. Taking a shower, getting dressed, making plans for the day, keeping yourself (and everyone in your care) fed, tidying up, and so on.

Having some executive function challenges is common to autistic people, but also to other atypical neurologies, such as ADD/ADHD, depression, and some learning disorders.

Image is a basket full of white plastic spoons, and over that are the words, “Everything that I commit to has to be considered in the bigger picture of whether I will likely have the energy to do it that day, week, month.”

There’s a popular metaphor that a lot of disabled people refer to called Spoon Theory. I’m aware that not everyone loves this metaphor, but it’s so well known it’s worth knowing about because you will probably come across it eventually. Spoon Theory was invented by a woman with lupus to explain to her able-bodied friend how she must conserve her energy in thoughtful ways, because she does not have an unlimited amount, and every single thing she does has a cost. The disabled person has a finite number of spoons to “spend” in a day, and depending on their disability, each physical task, executive functioning task, social interaction, sensory experience, and so on – will deplete their number of spoons.

There’s another really good metaphor that an autistic person came up with, and I think people with ADHD will also relate closely to this, called Splines Theory. The phrase “reticulating splines” is a gamer inside joke – a made-up term that some old computer games used for their load screens. Splines Theory aims to explain why autistic people may need a lot of time and energy to “load” a new task, and may then become hyper focused on the task, and have a difficult/impossible time dealing with interruptions or moving onto another task.

I feel that in the past year I reached a state some call “autistic burnout,” which is what precipitated my seeking a diagnosis and more support. I sometimes feel like my executive function has collapsed. It’s like a toddler in a meltdown who goes limp-noodle and suddenly weighs a thousand pounds. It’s like a dog on a leash who refuses to go another step and seems to turn his body into stone. I stubbornly believe I can do more, but my brain says NOPE. NOT DOING THAT.

Other times it rallies and I can do the thing, and I feel like I’m totally doing it, but then my brain collapses. It takes me hours sometimes to recover from ordinary tasks or outings that are not physically or mentally taxing in better days. But right now, they just are.

I am now throwing all of the self care resources in the book at myself in order to get out of survival mode, or what my therapist has described as “the basement level” of functioning. I am taking care of my family and myself in a basic way, and I’m handling some responsibilities on top of that like illustration work and the co-op startup, but I am tired all the time and EVERY thing I do takes tremendous effort. That includes things I really want to do, which is so frustrating.

Even though I don’t have a physical disability, the concept of limited resources feels all too real to me at this time in my life. If I go to a playdate in the morning, I will not be able to go grocery shopping in the afternoon. If I have a meeting scheduled for the evening, I have to structure my day so that I am not doing much before then. Every thing that I commit to has to be considered in the bigger picture of whether I will likely have the energy, the spoons if you will, to do it that day, week, month.

At the same time, becoming aware of my executive functioning challenges gives me new hope. So many times in my life I’ve beat myself up for failures big and small: why couldn’t I hack it at art school? Why didn’t I do more in college? Why couldn’t I do better as a faux finishing contractor? Why aren’t I earning a decent living as an illustrator? Now I have this fuller knowledge of myself that I can use to build upon my strengths and stop trying to force myself to operate in ways that are not good for me.

I am now seeking help in various ways, but I also have to face the stark reality that I cannot rush a recovery from burnout. The whole point of this is that I need to slow down and have been rushing and pushing too much. Working with my neurology instead of fighting it is a key to moving forward but I am still figuring out how exactly to do that.

A Shifting Sensory World

Autism, Identity, Neurodiversity, Parenting

Everyone has senses. And most people have sensory issues of some kind, to some degree. Here is your mini primer on sensory processing: you already know about sight, hearing, taste, smell, and touch. But we have many more senses than those, including our senses of pain, temperature, vibration, balance (sometimes called vestibular sense), and proprioception – which includes the ability to sense your own movements, the position of your body parts, the sort of sense of being in your body that many people take for granted.

Introverts are more likely to be sensitive than extroverts in many ways – not just emotionally, but in the ways they perceive the world. Some people have sensory processing disorders (not an official diagnosis in the DSM but these would be sensory issues that are more intense than just being “sensitive”) who are not on the autism spectrum. Autistic people have sensory issues (though this is not the only thing that points to a person being autistic, it’s a significant one) that differ in degree from the neurotypical population, and sometimes in kind (that is to say, some senses may be heightened, some under responsive, and some are just different).

When I first went to see my psychologist to find out whether it would be worth evaluating me for autism, she asked me whether I could remember times during my childhood when I struggled with or withdrew from certain activities or environments due to sensory issues. I was startled by how difficult it was for me to answer this question.

I’ve always considered myself an introspective and fairly self aware person (after all I have a dozen hand written journals from my adolescent years) but this was not something I had ever been tuned into. What I knew was then I had always found myself tipping over into what I simply called “a bad mood” for reasons that I could not explain at all. The only way I could explain this to myself was that I must simply be “a moody person.” Maybe it was because Cancer is my astrological sign – I couldn’t think of any other explanation. I never liked this about myself but there seemed to be so little I could do to change it. It’s not that I was depressed or bipolar, I was just irritable, frequently, at unpredictable (to me) times. Over the years I’ve found myself apologizing and frustrated that I could not tell a loved one why I was being so unpleasant – there was nothing really wrong that I could think of – nor could I seem to snap out of it.

I was pretty self aware as a person, but I couldn’t be fully self aware as an autistic person, because not only did I not know I was autistic, I did not even know that something called “sensory processing” existed.

Then I had a child, and when my child was a toddler I would reach out for help with this parenting issue or that, and more than one person suggested that I look into whether he might have sensory processing disorder. The funny thing was, I read website and website and even a book or two, and there was the time we brought him for an OT evaluation, and I would comb through these lists of sensory processing issues and I just kept thinking, actually that sounds more like ME than him. Huh.

I’ve only veeeerrrry slowly, over many many months, begun to connect the dots between my apparent “moods,” and the actual sensory issues that triggered them. For half my life I was terribly disconnected from my sensory needs and aversions and was just kind of barreling through life ignoring them or giving them only cursory attention, much to my detriment.

This actually is an incredibly common phenomenon, even after an autistic person realizes they are autistic and have special sensory needs. Because autistic people usually also have executive functioning difficulties (I promised before I’d write specifically about executive functioning, and I will, sometime), it can take us longer than a neurotypical person to register sensory information or discomfort. It’s common to not realize that you are hungry, cold, in pain, etc. until you are on the verge of a meltdown and finally focus on what it is that has been bothering you beneath the surface.

Image shows a closeup of points of light in blurred bokeh effect, with the words “I’ve begun to connect the dots between my apparent ‘moods’ and the actual sensory issues that triggered them.”

 * Seams. One of the things that is always on those lists of sensory issues is “bothered by seams in clothing.” I would always see that and think, no, seams don’t hurt or scratch me. As long as they are always perfectly lined up and symmetrical on my body and not bunched up or — ohhhhh.

Light touch: wind blows. I’ve always hated the wind. The way it feels on my skin, the way it ripples my clothes, yeeeuchh. In high school I wore my hair long, and when the wind would whip my hair into my eyes and my mouth or even when it just blew over my head and messed up the part in my hair, I would find myself falling into a helpless rage. Over wind. This is one of the lesser known reasons why I now wear my hair short!

* Light touch: not OCD. Also sometimes when something, say, grazes my arm just slightly, I will feel a revolting sensation in that spot for a long time afterward, but I can sometimes fix it by grazing the other arm in the same place purposely. I still feel it but the symmetrical feeling makes it less irksome. This is the sort of thing that some people incorrectly dub “OCD.” It’s not OCD, it’s a sensory issue.

NoisyMy most intense, and most challenging, sensory issue is auditory processing. It’s still hard to explain exactly how it works for me, but I guess one way to describe it is that my auditory channel takes in a LOT of information and frequently floods me with way too much. It’s sort of a fluid and ever-changing sense that I seem to be able to control very little. (An autistic friend recently told me that she can kind of “shut off” her auditory input in noisy environments, which made me feel very envious!) Sometimes I am not aware that I am overloaded by sounds until I begin to melt down (for me this looks like getting angry and bitchy – one of my “bad moods”). Sometimes I am hyperaware of sounds and it’s like a scene in a movie where the protagonist is freaking out and the audio is all loud and chaotic. Sometimes I begin to involuntarily shut down auditory input and cannot focus on what people are saying to me – sort of like when you are driving while tired and keep zoning out so you don’t remember how you got to where you are, even though you are trying to pay attention – but with listening skills. I hate white noise, like ceiling fans. I hate repetitive noises that are not perfectly synched – so a sink dripping or a person snoring is horrid, while a ticking clock is probably okay. I love loud music but music that’s just barely audible drives me bananas.

* Am I in my body? One of the weirdest, but also to me one of the coolest, sensory issues I experience is off kilter proprioception. M. Kelter writes beautifully about his proprioceptive issues (and other things – I love his writing) and he also happens to love touching walls, like me – whenever I walk down the narrow hallway in my house I run the backs of my fingertips along the wall. But enough about walls.

Proprioception is somewhat hard to explain but it’s the sense of being in your body, one with your body, feeling all of your parts, feeling your own weight and mass. It’s probably quite difficult to imagine if you don’t ever have atypical proprioception.

I can remember at least as early as my teen years, and this still happens, that I would suddenly get this uncanny feeling of looking out of my own face. I would become too aware of my own nose, and then feel like I was looking down at my body doing things, but not feel totally one hundred percent integrated with that body, very much a kid’s cartoon in which a little person is sitting inside of a robot’s head operating a walking, talking robot. But who was this “me” who was looking out of this body, and why was I in this body? It’s an unsettling mindset that I don’t like to linger in for too long, but it’s also kind of oddly pleasurable and comforting too, possibly because I have always had these experiences and they are, though strange, familiar. It’s only recently that I have realized this is related to the proprioceptive sense and the way an autistic mind can become sort of disconnected (I think Kelter uses the word “floating” a lot) from the body.

Squinting. I am a little sensitive to light, always have to wear sunglasses outside, don’t like fluorescent lights. I really dislike contrasty lighting, so a dim space with bright spotlights makes me feel very yucky. Often when I am drawing I squint in order to screen out excess information and see just the overall composition of my work. But my sight is mostly a sense that gives me pleasure.

Bitter Betty. I like foods with strong flavors, especially bitter flavors. Probably why I love coffee with no sweetener, and the hoppier the better when it comes to beer. I also like spicy stuff and salty stuff. I like complex foods that have a lot of flavors going on. Lots of people with sensory issues have the opposite preferences for very bland foods. They are not just being picky but are quite overwhelmed by food flavors (or textures).

* Air “fresheners.” I think I have a pretty sensitive sense of smell, but mostly smells don’t bother me much. Even body odor, which most people find offensive, is a fairly neutral odor to me. The smells that bother me the most are industrial-chemical smells and artificial scents, like new carpeting, rubber tires, etc. The worst are those plug-in air fresheners – when I used to be an interior painter, I couldn’t work in a house that had one plugged in. When someone comes from a house that has a lot of air freshener, I can smell it on their clothes for hours. Those types of scents give me a headache and make me feel ill. I’d rather just smell your ordinary house smells!

That time of the month. All of my sensory issues are more intense when I have PMS. That’s quite common with autistic women. The thing I notice the most is my tactile senses – being touched, how my clothes feel – are the most bothersome during that time of the month. Very annoying when you are already feeling cranky and hormonal!

I’m still in the stage of identifying my own sensory issues, almost like uncovering repressed memories, except that they are not memories of things past, but repressed feelings that I presently feel. If you have sensory issues, whether they are part of something like sensory processing disorder or autism or just being a sensitive person, I think it’s okay to be up front with them. I admit that I didn’t always feel this way and used to think that people should just “get over it,” probably because I was so used to doing the same and wouldn’t allow myself to voice my preferences.

What are your preferences, what kinds of sensory inputs do you abhor and which do you love? Drop me a comment, I’d love to know!

Frequently Asked Question

Autism, Identity, Neurodiversity

The most common question I’ve heard since I came out as an autistic person is, what was it about you that made you seek an autism diagnosis?

I’ve struggled to answer this because I feel like it contains several different questions and I’m not entirely sure which one a person is asking me when they ask it. (You might take note that struggling to answer a question because I am somewhat paralyzed by having to choose from all the many answers that I could give… is part of being autistic!)

So maybe I can unpack all of the questions within the question and answer them separately. This is what I think people might really be asking me when they ask me, what is it about you that made you want to find out if you have autism?

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What are your symptoms? We want specific examples of how you are different.

This one might be the trickiest to answer because although I have always felt different from most people, I can’t think in terms of “symptoms.” Autism is my neurology, it’s the way my brain is wired, not something I “have.” So while I have always felt different from most other people, I’ve always just felt like me. Maybe it’s actually you neurotypical folks who are the weird ones. Ha!

It wasn’t really having “symptoms” that made me think I was autistic, it was seeing myself with crystal clarity in the experiences of other autistic women. But if you want some specific examples of how I think differently, well. I’ll try.

Sensory sensitivities were the first thing that came to my notice via Musings of an Aspie. Being too cold until suddenly I realize I am too hot. Being uncomfortable in my clothes, just, all day. Being on edge, angry, snapping at people, only to realize that there is a background noise that’s actually causing my bad mood. A lot of people have sensory sensitivities without being autistic, but I mention them because realizing what mine are and being able to manage my environment a little are key ways for me to feel good and do the things I need to do.

The longest running issue for me that has caused me the most pain in life is issues with social communication. Many people who read my blog and some on Facebook have mainly interacted with me via written word – this is where I am at my best, communication-wise. So the idea that I have trouble communicating may seem absurd. But verbally, in person or on the phone, I do. I wrote a whole separate post on that because it’s big and complex, but in a nutshell, I never really know what to say, what’s appropriate, what’s expected of me, where to begin and where to end, and a lot of times I just kind of shut down and go blank in social situations. This has always prevented me from achieving the kinds of connections I’ve desperately craved. And sometimes it is so discouraging or just plain exhausting that I don’t even try. So that can be challenging.

And the last area where I feel the most “different” is in executive functioning. I can detail that in yet another post, but the gist of it is that executive functioning is kind of the command center of the brain, the part of you that organizes, plans, prioritizes, executes, and manages all the little and big things you have to do in life. The simplest way to explain why executive functioning is sometimes a challenging area for me is that I get overwhelmed quickly, easily, and often.

But what was wrong, really – were you suffering?

That is a pretty personal question and no one’s outright asking it, but maybe it is implied. All I can say is, I was getting by, as I have always gotten by in life as an undiagnosed autistic. But I felt that getting by was not enough anymore as I have a husband and two kids who need me to do better than just get through the days. I have other family members I long to connect with more than I have. And I have things that I want to do that require me to get out of survival mode. Of course this diagnosis is for myself, but it’s also for all of the people who love me, and whom I love, too.

Am I autistic too?

There are a few people who are curious “what about me” is autistic because they think they might be autistic too. No, not everyone is on the spectrum, but certainly some people are out there who are undiagnosed but autistic. Women especially tend to be underdiagnosed and the big discrepancy in the numbers of male and female autistics is most likely due to underdiagnosis in females. So what I tell people who seriously think they might be autistic and seem to have a strong need to find out is, it’s worth looking into. I am really glad I did.

I also caution you that it can be expensive to get diagnosed, so look into what your insurance will cover, and women should try to find professionals who specialize in diagnosing women with autism, because not all of them recognize autism in women well. Autistic women are more likely to be misdiagnosed with depression, anxiety, OCD, ADD, etc. Don’t let that scare you off, but be aware of it.

If you want to read more, these links might be helpful:

Essential Reading from Musings of a Aspie

Underdiagnosis in Autistic Females from Seventh Voice

The RAADS-R is designed to be used in a clinical setting but you can try it at home

The Aspie Quiz is another interesting self assessment tool

But why did you feel the need to label yourself this way?

I suspect that what some people mean when they ask this question is, why would you want to be known as autistic when you can easily pass for “normal?” If you ask this, you are assuming that autistic is a bad thing to be, something no one would want to be if they had the option to choose. It’s not. And you are also discounting the stress and the depression associated with “passing,” which for me have come to outweigh the stigma of autism.

If you are secretly wondering why I would want to label myself, I understand why you feel that way, because I once felt the same, until I learned more about autism, which is widely and unfortunately misunderstood.

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Autism is not a disease or a kind of brain injury, it’s a neurological variant. It’s genetic, inheritable, and has always been part of the human species, but is only now being accurately diagnosed. It is also, however, a real difference in neurology and not just a personality profile. I’m not “just quirky,” my brain actually works differently from the neurotypical brain. It’s not better or worse, it’s just different. (Autistic self-advocates do not deny that autism can be disabling to varying degrees, but that still does not mean there is something “wrong” with any of us. Disability is a normal part of the human experience.)

So I feel a need to label myself this way because this is the way I am. I am not ashamed of it. Sometimes I am proud of it. But essentially it is a neutral facet of my being. Being my true self gives me immense satisfaction, as I think it does for anyone. Oprah made a cliche out of “Living Your Best Life,” but that’s because the idea of authenticity resonates with so many people. And for me, realizing, accepting, and declaring that I am autistic is a path to authenticity. Autism is not *everything* about me, but it’s an integral part.

So if you ask me why I want to label myself this way, to “come out?” – my honest answer is, why wouldn’t I? Why wouldn’t I want to exist in the world as my authentic self? Why wouldn’t I want people to know who I really am? Why wouldn’t I want to be free?

The only reason why not is fear. Every person who lives in a closet for one reason or another has to balance the fear of coming out with the pain of staying in. That fear has legit reasons so I don’t judge anyone for staying in. But I’m coming out.

Neurodivergent

Autism, Identity, Neurodiversity

ananswerYou may or may not remember that I made a passing mention, in a This & That post last fall, of reading and relating to a post on the blog Musings of an Aspie. What I didn’t mention after that was that I continued to read Musings of an Aspie, and I continued to see myself in Cynthia Kim’s blog, and it didn’t take me long to begin to really wonder, was I on the autistic spectrum after all?

Meanwhile, I was struggling to understand why I was feeling the way I was. Tired all the time, flaring up with a hot temper at the littlest things. It didn’t make sense to me that I was so exhausted and edgy and irritable even when I was getting enough sleep, even once I pared down my lifestyle to something very manageable and slow paced, even when I scaled back my workload, even as unschooling took a lot of pressure off my parenting, even though I basically love my life and have a great husband and good friends and adore my kids. Why did things still not feel right? And that dissonance was not a new feeling, as in postpartum depression, but something that I’d always felt to some degree, but gradually became too intense to ignore anymore.

In the months between then and now, I read and researched and learned a LOT about autism in women and how that looks different from what most people think autism looks like (for complicated reasons – I can explain more another time). I formed a support group for autistic women and women who, like me, were thinking they might be autistic, where we could share experiences and ask questions and sort everything out in a safe and supportive space. Those new friends of mine have been invaluable – I appreciate them so much.

Finally, I found a local psychologist who specializes in seeing autistic women, and I went to her for an assessment. It’s worth pointing out that this process can be very expensive and I wouldn’t have been able to do it if we hadn’t had the good health insurance that we do – I wish that more people had access to the psychiatric care they need, but it’s not always so easy.

I was incredibly nervous about the assessment – I felt vulnerable and even a little humiliated just by undergoing a psych eval – and was honestly scared that I would not get diagnosed with autism. Why? The idea of being autistic was like a missing piece in my life that suddenly made everything make sense. I was terrified that if it was taken back out of the picture, I would be left with the same old confusing mess as before.

But I did, in fact, receive a diagnosis of autism last week. It’s official. On the long drive home from my final evaluation appointment, I cried tears of relief and release.

I think I also cried a little for all the me’s I’d ever been – the shy little girl, the misfit teen, the lonely young adult – and what could have been if only I’d known then what I know now.

The psychologist also told me that my results showed chronic dysthemia, a low level depression that’s always been with me and explains a lot of why my energy level tends to run so low. In her view, the difference between neurotypical and how neurodivergent a person is tends to get “colored in” by depression and/or anxiety. This made a lot of sense to me as basically my efforts to meet the neurotypical world on its terms every day result in fatigue and vague sense of never being “enough.”

I know this will be surprising to a lot of people, and I understand why – I was surprised when I first realized that I might be autistic. I think this is largely due to the fact that very few people, besides people who are actually autistic, know much about autism – which several people have told me since hearing my news. But I can tell you that for me, it just means a huge weight has lifted off my shoulders. Knowing that I am, in fact, a perfectly normal autistic person, makes everything just slide into place. It’s an answer to a question I didn’t even know I was asking for the first 36 years of my life.