Spectrum: Can You Feel Yourself Think?

All my life, I have been able to feel, to sense, my brain thinking. I feel the electronic energy of synapses firing and the chemical releasing of neurotransmitters. I don’t know how many other people feel this–it’s a tricky thing to talk about.

I’ve googled it, and the results aren’t that encouraging (see this post on Quora, for example). I’ve asked my family members, both when I was a child, and, more recently, as an adult. None of them can feel, in their brain, brain activity, and they all attributed my claims to my imagination.

When I’ve explained to my boyfriend that I can feel the regions of my brain that are active when I play music, when I read, when I daydream, when I play video games, when I write, and when I practice brain-training games at Lumosity, he doesn’t scoff, even though he doesn’t share a similar sensory experience of brain activity.

I read recently about a study led by David Sulzer at Columbia University Medical Center which indicated that autistic people, both children and adults, have “too many” synapses. I’m wondering if it’s the abundance of synapses that allows me to feel my brain activity, and I’m wondering how many other neurodivergent people have this type of sensory awareness.

Sulzer’s study reports that neurotypical children experience synaptic pruning, trimming back some of the synapses, through a developmental process called autophagy. This pruning, the researchers believe, is inhibited in autistic children, resulting in brains with multi-branched synapses.

“What’s remarkable about the findings,” continued Sulzer, “is that hundreds of genes have been linked to autism, but almost all of our human subjects had overactive mTOR and decreased autophagy, and all appear to have a lack of normal synaptic pruning. This says that many, perhaps the majority, of genes may converge onto this mTOR/autophagy pathway, the same way that many tributaries all lead into the Mississippi River. Overactive mTOR and reduced autophagy, by blocking normal synaptic pruning that may underlie learning appropriate behavior, may be a unifying feature of autism.”

Children With Autism Have Extra Synapses In Their Brains.” IFL Science.

One direction, terrifying to me, that some are exploring as a result of these findings is the development of drugs to artificially prune the “extra” synapses in autistic children and adults–to make us “normal.”

Our problem is not that we have “too many” synapses. Our problem is that others have issues with our divergent perceptions, thoughts, responses, and actions. Create a world that accommodates divergence and diversity, and having more synapses becomes a gift, rather than, simply, a disability or difference that makes us weird.

Any ecologist can talk at length about the value of diversity. Healthy ecosystems depend on biodiversity. (In fact, the greatest threat and tragedy in conjunction with the climate crisis is not the direct inconvenience and hardship experienced by people; it is the threatened extinction of millions of species, having tragic impacts on the biodiversity of our planet.)

Diversity serves an evolutionary purpose. When environments change, the more genetically diverse a population, the better the chances for adaptation and survival.

In the human species, too, our diversity is our greatest strength. We should not want to achieve a population that consists solely of the neurotypical. Health is important, of course, as is creating societies, cultures, and a world that accommodates, appreciates, and welcomes diversity and divergence of all sorts, including neurodivergence. But to administer drugs to prune synapses so that autistic or other neurodiverse individuals can learn “appropriate behavior?” That seems dangerous and insidious.

Likely, an abundance of synapses leads to rich, abundant perception. For several years, I’ve been following the blog of Helen White, an artist who’s recently self-identified as autistic. Even the name of her blog, Spinning the Light, describes the experience of a synaptically abundant person, and looking through her artwork is seeing through the eyes of someone whose mind is lit up by firing synapses. She paints the way the world looks to me.

I discovered her blog looking for someone who shared my physical sensations of spikes in the Schumann resonance, during the first time I identified the tingling buzz throughout my electronic fields as being connected with this. I found this post by her. That post led me to discover the rich accounts and insights which she shares throughout her blog, wisdom drawn from enhanced perception.

The increased sensitivity experienced by those of us with abundant synapses shifts our perception, allowing us to make connections and notice things that might escape others.

I am guessing that many of my awkward feelings in social situations, especially in large groups, comes from this excess of synaptic activity. I perceive “too much,” and that often causes me to miss what others are perceiving. It often feels to me that others connect with each other through synaptic synchronicity, whereas I experience the same firing of synapses that they do, plus more, and I don’t always know which synaptic activity to pay the most attention to. Sometimes, it seems to me that the important perceptions are the ones that are not shared. This causes me to respond to impulses or to make comments that seem odd or out-of-place to the others. To me, I am stating what seems most important, given the specific input that I am making sense of at the moment. But to them, these observations seem out-of-the-blue, disconnected to the shared experience of the moment.

But I have always valued the out-of-the-blue more than the mundane, for that’s where the magic lies.

Postnote: Helen White continues this conversation with some beautiful insights into “Being the unpruned tree” over on her blog. Take a look!

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Spectrum: What Fills the Gap Is Spirit

My friend and reader Ashubii (check out her blog, if you haven’t yet–her writing is rich and delicious!) reminded me that I haven’t yet shared the post I want to write about online friendships. I have been mentally composing it for at least five months. Each time, before I sit down to write it, something happens that causes me to feel insecurity and confusion regarding the points I’d planned to make–so I’ve been putting it off. I guess I don’t feel it’s 100% authentic yet, so I am waiting. I’ve been waiting for a time when my confidence matches the tone of the post I’ve written internally, but now I’m thinking that I will likely write a different version, one that approaches the confusion and insecurity, while also expressing, yet in a less resolved way, some of the happier points I want to make.

Meanwhile, something else is fresh for me.

I’ve been exploring the way my brain feels in social situations. It is as if my synapses run on parallel tracks, lacking the cross-overs that neurotypicals have. (Quick research indicates that neurologists are exploring what they call parallel fiber synapse in conjunction with autism.)

I am aware of the inability to cross from one synaptic track to the other–and this causes processing-fatigue after social interactions that exceed my capacity. I’ve also been wondering what happens in the gap between these two parallel tracks, for that region of my being and consciousness feels to me very rich, very ripe, and very full of potential. It’s also where I dwell–in the gap.

Two parallel stories from a recent evening illustrate:

I.

Our department coordinated and produced the district’s “Celebration of the Stars,” an honoring of over 100 teachers, administrators, and staff members. In past years, our department director has understood and respected my preference to avoid large groups, so I haven’t been required to help.

This year, our new director wanted the entire department to pitch in. I very much want to be part of the team–so I was willing to make it work, even though I considered a) asking to be excused or to help in a different way, and b) calling in sick (I knew I wouldn’t do this, but I wanted to consider it, so I could realize that it was an option, if I chose.). I decided to shoulder the consequences (nervousness, possibly anxiety, upset at having our household and evening schedule disrupted, and post-event processing fatigue). It would be worth it to contribute.

I let myself have a mini-meltdown driving into work that day–and that relieved some of the pre-event anxiety.

I arrived early to help with set-up and was rewarded by a few joyful moments delivering bouquets of helium balloons from prep room to stage. Running down the empty high school hall with dozens of balloons, I felt buoyant, like I would lift at any moment! That joy remains! Then, the balloon strings got tangled, and so a coworker and I shared giggles as we untangled them.

My job was to staff the sign-in booth, greeting people as they arrived, checking off names of the honorees, and handing out certificates. This task was fun and easy–I loved the smiles as we congratulated recipients, and it felt marvelous to recognize so many in our district who give so much.

The times where I became aware of my divergent ways of processing happened in the off-moments and pauses, when clusters of people gathered to talk, and I watched the conversing groups. In those moments, I became, as I always do in social situations, keenly aware that I was missing things–texts, contexts, and subtexts were being shared which I had no access to. I could witness the effect of these shared meanings among those who shared them, but I stood outside the circle of sharing, clueless to the meanings.

This is where the gaps are.

For example, one group of teachers sat together, smiling, laughing, and enjoying their mutual congratulations. Then, one would make a snide comment–or even just a look–and, for the briefest of moments, they would all share in the meaning of that. Something was conveyed, agreed upon, and shared. As an onlooker, I lingered in the smiles, puzzled by the real meaning in the moments between the grins. I can see the two parallel tracks–the face of happiness and the grimace of complaint–but I don’t have the connecting synapses to see which is mask and which is true, or even how both could exist simultaneously. But it seems to me that neurotypicals have these connecting fibers, being able to see past mask to the true meaning, without breaking the socially acceptable facade. When I watch my coworkers, they convey volumes of meaning with each other through a glance, without needing to say a word. And if I ask what about what is really going on, my question is interpreted as being inappropriate–for, apparently, there’s some code about what can be said in words and what can only be said in a look. I am guessing that when one has connections between the parallel fibers, those connections allow one to translate the looks into meaning and to see past the spoken word.

At another moment, I said the wrong thing at the wrong time. One of the coordinators had made the mistake of not being clear in the district-wide email invitation she sent out that, just because you received this email, it did not mean you were going to be honored, so we had about four people show up expecting to get awards who hadn’t been recognized. I mentioned to the woman helping with sign-in that we needed to be more clear about this next year. She proceeded handing out certificates as if she hadn’t heard me. My impulse was to repeat myself, perhaps a little louder, since I’d spoken softly–then I realized: Oh. She did hear! It’s just that this is not the time nor place for this comment. But it’s the gaps that leads me to make that comment, regardless of place or time.

The evening, while successful and worthwhile, exhausted me. A few days later, my brain still processed moments, overheard conversations, and exchanges, trying to bridge those gaps in parallel synaptic tracks. I am trying to make meaning out of the shared experience that seems so common to most everyone else who was there that night.

And of course, there are echoes of every mother-daughter tea, high school dance, busy elementary school classroom, wedding reception, family celebration, office meeting, and countless other social interactions involving more than five people where I stood, outside, even if I was inside, trying to bridge these gaps.

II.

And then, there was this exquisitely beautiful moment:

During the recognition ceremony, I remained in the entry hall, at the sign-in table, to greet late-comers, answer questions, and help as needed. Early on, a big sister, around 12 or 13, came out, carrying her wailing two-year-old brother. The auditorium was too loud, too dark, too crowded, too confining, and he needed OUT. I understand, for that’s the real reason I remained in the relatively quiet and less crowded foyer.

She carried her little brother outside, brought him back in, and one of the other staff members handed him one of those delightful balloons, a big gold mylar star, filled with helium!

I wrapped the string around his wrist, so it wouldn’t fly away.

“Is that OK?” I asked him. He nodded.

We played for a bit, batting the balloon and jumping, miming the act of being lifted off our feet and flying, floating.

We were both there–present, wholly present, with our smiles, our game, the joy of a bright balloon.

“Are you OK?” he asked me during a pause in the game, and I smiled inside at the echolalia of my earlier question to him.

“Yeah, I’m OK,” I replied. “Are you?”

“Yeah.”

We played some more.

He became very still for a moment. I could see him tuning in, feeling what was inside of him, and identifying that feeling.

Very softly, he said, “I love it.”

“Aw,” I replied, “Do you love your balloon?”

He broke out into a smile as he looked at me. “I love you!” he said.

And he ran to me, wrapped his arms around my neck. “I love you,” he repeated, and he kissed my cheek.

It was–genuine. True. Authentic. It was all within the gap, not happening on parallel tracks. This was a pure expression of a pure feeling.

Love rose up through the earth, through the soles of his feet, into his heart–and with the consciousness of being, this two-year-old felt, identified, and expressed love. Just like that.

In the purity of feeling, energy, and expression, there is no confusion. There are no parallel tracks–no masks, no facade.

He and I met each other in the gap–where we both were simply our present human selves. And in that meeting, we shared love, which is one of the energies that can fill the gap.

As exhausted as I became in processing the rest of the social interactions of that evening, that simple and pure exchange, with another human who ventured into the gap with me, fills me with energy.

So, I am aware of many of the consequences in missing meaning and connection with others that come from my divergent neurology.

And I am also aware of the countless gifts, in presence, in spirit, in connecting with divine energy, with nature, with purity, and with love, that come from my neurodiversity.

What fills the gap? It is love, energy, presence. Spirit.

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Spectrum: What Is Friendship?

My ideal in-person friendship works like this: Every three weeks or once a month, my friend and I meet on a weekday afternoon for tea or coffee at a café, preferably one where we can sit in a bright garden or cozy indoor corner facing the door. My friend shares their current interest, talking without interruption for as long as they want. I don’t have to ask questions–I just listen and respond, drawing connections between what my friend says and my current thoughts and observations about life. Then it’s my turn, and I get to talk without interruption–even for ten minutes, if I want to–about my current special interest, and after I’ve said all that’s begged to be said, my friend can ask me questions and draw connections. And then, we can talk more, or, better yet, sit in companionable silence while the birds sing around us and the sun shines and the light bathes our eyes and quiets our minds.

I had a friendship like that! It lasted for about three years. During that time, my current topics of interest were cello, gardening, and life-patterns in romantic relationships (and the intersects of those three interests) and those topics engaged my friend’s attention. Then, my special interest shifted to the Sims, artificial intelligence, and SimLit, and my friend grew restless. I have a dread fear of boring people, and I learned in early childhood that it’s not always possible to talk about special interests with others because they find the topics boring and the details overwhelming. So, I made the effort to talk about things of mutual interest, and so, while it doesn’t fit my rather high and specific ideal, this friendship still offers me enjoyment. I’m used to keeping my special interests to myself.

For my friend, though, this friendship doesn’t come close to her ideal or her expectations. Its limitations frustrate her, and she’s in the process of letting it go. She would like a friendship that fits her expectations for the “normal” progression of a friendship: Meeting each other’s partners; having meals at each other’s houses; doing things together on weekends.

Those requirements don’t work for me. I become confused and overwhelmed when I’m with my boyfriend and another that I’m close to: there’s just too much for me to process, and I don’t enjoy it. I don’t want to have others over. My home’s my sanctuary, and I count on being able to keep the space filled with only the feelings and thoughts of my boyfriend and myself. And my weekends are taken with restoring my energy from the busy week, doing my online teaching activities, taking care of all the household tasks that wait for the weekend, and playing (which means, cello, writing, gardening, video games, and daydreaming).

What I liked about our friendship was that it didn’t fit “normal” expectations: it was special, and it fit me, and for a while, it fit both of us.

My coworkers spend time in the evenings and on weekends with their friends. Since I know that work takes as much of their capacity as it does mine (around 90-100%, more, if they are mothers of young children), I wonder how they are able to manage this. From what I gather, it’s because, for the most part, their time with their friends in leisure hours refreshes, fulfills, and engages them. It’s not a hardship or sacrifice: it’s a treat. In a few cases, some may get together with friends because it’s expected, and then regret it later because they’re tired and drained–but for the most part, they seem to enjoy it and it adds something to their lives.

I’ve tried this–honestly, earnestly, sincerely, arduously, and prodigiously. I’ve had times when I’ve invited people over for supper or afternoon tea, held small house parties, tried to get together with others for hikes or outings (which, somehow, I’ve never been able to find takers for), and even accepted a few of the few-and-far-between invitations I’ve received. It’s left me exhausted and more than unhappy.

The requirements for this type of “normal” friendship do not fit me and detract from my ability to function, handle all the aspects of my life, and be happy.

Friendship has been a life-long puzzle for me. My mom tells a story about my social interactions in preschool: I would welcome every new child, showing them around the room, explaining when we could use the toys, describing the schedule, letting them know some of the less obvious rules, enthusing about the delicious graham crackers and warning about the overly sweet apple juice. The new children would think that, in me, they had found their new best friend. After showing them around, I would head off alone for one my favorite activities (either painting on the easel or working on the tracks for the train set). My mom said that this behavior confused the children, who expected that I would play with them. When I first heard this story and reflected on my own thoughts and feelings during those times, I remember feeling that we were a community. In my mind, we were all friends, and I wanted everyone to belong. And once everyone felt welcome, then I wanted us to be free to do what we wanted to do. And what I wanted to do was to paint, without interruption and without having to talk.

I had friends in kindergarten and first grade whom I played with and walked home from school with. After we moved to a new town when I was in second grade, I could never figure out the social rules and remained on the outside until I made few good friends in junior high and high school. During those lonely days in elementary school, I thought about friendship a lot. I studied Joan Walsh Anglund’s book A Friend is Someone Who Likes You. The only part of it that really made sense to me was the part about how sometimes a tree could be your friend; for all of my life, trees have been some of my best friends.

I didn’t, and still don’t, equate “someone who likes you” with friendship. Yes, I want my friends to like me. But not everyone who likes me is my friend. I have had former bosses and retired coworkers come up to me and say, “You are one of my favorite people!” It has always puzzled me, as much as it’s gratified me. If I’m a favorite person of theirs, why aren’t we friends?

I have “friendliness” down: It’s how I treat everyone, and this brings me great happiness. I am still much like that child in preschool who wants everyone–literally everyone and every living thing on the planet–to feel that they belong, they are valued, they are part of the community.

Friendship, I’m still learning about.

There was a time last year, after a few intensive years of striving to find an approach towards developing and maintaining friendship that fit me, when I decided “I don’t do friendship.” I do friendliness. I had read an article from the New York Times called “Friendship’s Dark Side: ‘We Need a Common Enemy” which reviewed studies on friendship, emphasizing its exclusive nature. During the time I read it, I was in the process of being excluded in the office. Early morning gossip, before I arrived, drew together some of the coworkers at the expense of leaving me outside the circle. One of my coworkers, who’d been a close work partner for over ten years, stopped initiating greetings and conversations. I still greeted her–because of my commitment to friendliness and cordiality, but as the lines of connection between her and another coworker grew taut, those between the two of us were snipped.

It’s possible to see this almost physically. When I walk into a gossip session happening in the office across the hall, I can see lines of light and energy stretched tight between the circle of gossipers. It shimmers and glows the more energetically they talk about someone else, actually feeding off of the energy of meanness and exclusion. This brings them closer.

I’m not willing to engage in that, though I can see how much pleasure and emotional satisfaction it brings them, like a feel-good drug for their brains and a social cement for their relationships.

For me, that’s not friendship. Or if it might be called that, I’m not willing to pay the price.

So what is friendship?

One of my online friends, Mike (@Shishwik at ESO), shared this definition with me:

“Friendship is a quest, a goal, and a lifelong commitment. For me it begins when I desire to know someone, for whatever reason. If the feeling is mutual then I willingly learn about that person, the whys and hows if you will. Once I know the person I can begin to understand the reasons behind the whys and hows. Once understanding is attained, love happens. Through love we become better people and closer to our true purpose here on Earth in my opinion: Truth, Beauty, and Kindness. What is brotherly love if not friendship? “

–Mike/@Shishwik

Substitute “sibling love” for “brotherly love”, and most of this definition works for me! I don’t expect or require my friends to make a lifelong commitment: I realize that circumstances, needs, and life-demands change, and so I am happy to let go of the friendship when the other person realizes that it no longer fits or satisfies them. However, when I examine my own feelings, I realize that I do make a lifelong commitment towards my friends. I’d welcome back any of the friends who were once, but are no longer, in my life, and, in fact, I still count erstwhile friends as friends.

The part of the definition which resonates most strongly with me is that it rests on understanding and the feelings of goodwill–the love–that flow from that. This love is caritas, αγάπη, core to the type of friendliness which welcomes others into the circle. This inclusive friendship views the world and the cosmos as one community, of which we are all parts. There is always room for one more.

This is friendship. One of the aspects I love most about this definition is that it leaves room for online friendships to qualify–and that’s a subject for a future post!

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Spectrum: White Lines on the Meter

My boyfriend and I have crafted a rich, warm, healthy, fulfilled and fulfilling life. It’s taken (and takes) lots of hard work, lots of good fortune, and lots of privilege (yet what we call “privilege” in this society, and the “privileges” upon which our life rests, are things which we should extend to everyone–I tend to see access to water, food, health and dental care, shelter, music, education, art, dance, exercise, literature, and equity as basic human rights, not privilege. Is it “privilege” that I am able to experience these human rights? It’s a crime that not everyone is. This is a tangent to be explored elsewhere, not here. Back to the topic at hand!)

It took us a few decades to build this life. Our first fifteen years together, we lived below the poverty level, moving often (over 30 times during that epoch), making it (and usually just barely making it) month-to-month. This was a time in the U.S. of rising homelessness, and the fear of becoming homeless loomed. We had no savings, and we rested on good fortune to protect us from crisis.

We did have a safety net in my family, who would have taken us in, if needed. And we are white, educated, with no visible disabilities. We looked like hippies and lived a counter-culture lifestyle, so that kept us on the outs in some ways, but it was always seen as a choice, and we lived on the West Coast where there was comfort in tribe. We fit in, even when we didn’t fit.

Grad school was what changed things for us, allowing me to discover and create a career that worked for me, for maintaining our free and creative lifestyle, and to allow us to, finally, buy a home, plant a garden, and settle in.

Keeping this life going takes about 98% of my capacity. This isn’t unusual. When I think of all the working women I know, each seems to be using 90-110% of their capacity to keep their lives, their homes, and their careers going. This is especially true for women with children.

This doesn’t seem to be the case for men. The men I know at work seem to be using around 40-60% of their capacity in their careers and at home. While the women are on the edge, with the taut lines of stress around their mouths, the men, generally speaking, relax their bellies, walk more slowly, and take the time to, sometimes, simply stand and look out at the sky.

(Back to the topic of privilege, which seems to want to assert itself in this post: that relaxation and within-capacity-operation that men enjoy in the work place should not be a privilege. It should be a basic human right, extended to women, too. It’s not equitable that women have to work twice as hard, generally make 20-40% less, and generally receive fewer promotions. It’s not equitable that, in addition, 60-90% of the housework falls to women.)

What happens, then, for someone using 90% or more of their capacity to keep things going when something extra comes along? When children are sick, cars break down, dentists or doctors need to be seen, and the cable guy needs to come? At these times, unless we have extra help, we exceed our capacity.

I feel fortunate that my present career doesn’t require full capacity, or at least not most of the time. (I do have rare periods of special projects when it does take 100-110% capacity.) When I taught full-time at the college-level, my career demands exceeded my capacity. A few weeks into the term, I was stretched too thin. Weekends were spent trying to recover, when I wasn’t reading papers, and those long winter and summer breaks were devoted to recuperation.

When my current web-editing job was 40 hours a week, and I was teaching three courses a term online, too, career-demands were around 100%. But for the past decade, I’ve been working only six hours a day at my office job. This makes my two jobs sustainable. I have long hours every morning to relax and fill myself with the garden and the cello. Evenings have long hours for enjoyment and relaxation. And the work itself is engaging and often fun. Teaching tasks happen on weekend afternoons, online, in the comfort of my bright and sunny living room, with Beethoven quartets playing on the stereo. This works for me, for our life.

During these past two weeks, I’ve been home on winter break from both jobs. Life during these past two weeks has required 10-20% of my capacity. It’s felt unusual, and it’s only in the past few days that the gears have shifted and I’m feeling comfortable with these lower demands. On Monday, it’s back to the office, and I’m looking forward to it. I like that full-meter feeling.

Comparing the demands of these past few weeks to the demands of the normal work week has me evaluating what, specifically, it is that requires so much of me during the work week. At home, the daily tasks of preparing meals and caring for the garden and household aren’t draining–they’re fulfilling, contributing, rather than using up, my energy.

At the office, the tasks I complete (converting text to html, correcting html code, designing web graphics and web pages, writing and editing copy) also contribute to my energy. I love the attention to detail, the immersion of coding, the satisfaction of presenting information clearly, and the rewards of finishing tasks.

The demands seem to come in two main areas: executive function and social interactions. Much of my energy goes towards prioritizing projects, scheduling work, sorting demands, and all of the micro-details connected with that, in addition to the transitions of starting and stopping. It requires a lot of energy to handle the executive functioning aspects of multiple projects, responsibilities, and tasks.

The social interactions seem to draw considerable amounts of my energy. If I didn’t make a point to talk with others, I would probably quite happily simply walk directly into my office each day, communicate primarily through email, and only talk to those directly involved with the projects I was working on and only about these projects. This approach wouldn’t require extra energy on my part, and I’d feel quite satisfied with it. But I expect that I would experience negative consequences. It seems to be required to greet and chat with the receptionist, with the friendly person in the office off the hall, with my office-mates, the others in our department, and my supervisor. It takes so much effort to do this. Is it possible that 50% of my overall capacity goes towards these social interactions?

I think it’s likely. Fifty percent for non-task-specific social interactions; forty percent for executive function: that leaves 8% for the actual work, which seems about right! This may not be an accurate measurement of where my energy goes, but this is what it feels like to me.

I’ve often wondered how it is that my workmates are able to socialize in their time off. Most of the women I work with get together with friends after work and on the weekends. They look forward to this. I’m not able to do this. All of my social energy is used up during the workweek, and if I got together with friends during my time off, I would be running in deficit in no time at all.

I finally figured out that it’s a matter of where do we get energy and where do we get drained. For my workmates, socializing, at work and in their time off, does not drain them. It fills them. So for them, to get together with friends after hours brings enjoyment, fulfillment, and refreshment.

For me, the social interactions at the office are tasking. Social interactions outside of the office would be more than I could handle. In my hours away from the office, I like to walk, practice yoga, prepare meals, spend time in my garden, play my cello, daydream, write, play video games, read, and think.

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Spectrum: Remarkable

Something remarkable has happened since I began this project. As I’ve incorporated into my self-expression all those snipped-off mannerisms, behaviors, gestures, vocalizations, and actions, that others had told me throughout my life weren’t acceptable for a “socialized person,” I have become integrated and whole.

I cannot hide my weirdness, no matter how I try, and the more I tried, the more confusing and uncomfortable it seemed to be to others, while making me unhappy to boot.

So look at this: When I talk, I might look away. I realize you might look away, too, following my darting gaze, thinking that I am looking behind you at something that I spotted. But when my gaze returns to you, you’ll realize, if you’re smart (and I’m finding most people are smart, and accepting, too), that I was just chasing my thoughts, and you will realize, once you get to know me, that this is one of my mannerisms.

If I begin to bounce on the soles of my feet when I get excited about what we’re talking about, if I start to swing my arms or clasp my fingers, you might smile or be surprised the first time. But as you get to know me, you’ll realize that this is what I do, and that moving like this helps me to focus and serves, actually, to calm me down so I can engage more fully in our conversation.

You’ll know, once you get to know me, that if you ask me about a special interest (currently, ESO, for example, and perennially, gardening or birds), I will talk as long as you will listen. But I promise that I will do my best to watch for signs that you need to leave or that you’re getting bored, and because I know I might miss those signs, I promise, too, that I will check in with you and understand when you’re done before I’ve said all that’s waiting to be said.

You’ll also know that I won’t volunteer much about myself, my interests, or my life without being asked. I will miss your cues when it’s my turn to talk, and if I do see them, I might say something that seems off-the-wall or off-topic, even though, in my mind, it’s not. I will do this whether I allow myself to be myself or whether I camouflage because this is simply something that is challenging for me. I’m missing the synapses to make these connections in communication.

But in realizing all of this, and in venturing to be myself anyway, I am finding so much joy. This opens me up to the gifts that my neurodiversity brings me, too, things like….

  • the way dust motes dance in the sunlight
  • the play of sunlight across a bare wall
  • refracted light in clouds
  • the shimmer of dried leaves as the wind stirs them on stalk
  • a flush of birds rising from the treeline
  • the swoop of a falcon
  • the interplay of harmony in a Mozart quartet
  • the buzz of cello tones through the spaces in my bones
  • the hours of living, fully immersed, in a video game, a novel, or a quartet
  • patterns, everywhere and in everything

I’ve allowed my expression at home, too, to be more natural, and it’s brought greater harmony, for my boyfriend fell in love with me back in my quirkiest days, and he is similar enough to me, neurologically, that he, too, enjoys word play based in sound (echolalia), funny gestures and bouncing-on-soles-of-the-feet, swinging arms, and getting lost in music.

One of the most surprising, and happiest, discoveries I’ve made is that, as I’ve stopped trying to “do friendship” in the way that’s recommended by all the experts I’ve ever read and everyone I’ve ever talked to or asked about this, including family, friends, and counselors, and have started to approach friendship in my own way, people are responding to me and seeking me out for a friend.

This is something I’ve noticed before in my life: when I try to “make friends” or focus on friendship, I end up feeling lonely and like a failure. I seem to make no progress, feeling confused and lacking.

But when I put aside “making friends” as a goal, when I allow myself to enjoy myself and my life, I find myself feeling very full, very alive, and attracting others who, yes, want me for a friend.

I have to do it my way (for no other way makes sense to me), which means I am simply open to respond to anyone who likes me (while being smart and responsible with boundaries and recognizing my own limitations and requirements).

My first intentions with this project were to explore in writing all the quirks and idiosyncrasies I’d shunted off from myself. But in my life outside of my writing, I have begun to stitch them back into the fabric that is me, and so now, I don’t need to write about all of these moments that had been stored away in the “Doesn’t Make Sense” folder–because now, these moments and scenes make sense to me. Now, they’re part of me. I’m on my way to expressing my full-spectrum life.

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Spectrum: Invisible Friends

Picture of CT with friends

If you were to ask me if I had friends, I would answer, “Oh, yes! Hundreds. Thousands. Millions, even!” 

Can you be friends with an alder leaf, a November cloud, a drop of rain slowly traversing the windshield, an arpeggio in E-flat major played on the cello, the man in the white sweater with frayed sleeves who smiles at you as you pass each other crossing the street, the spade-foot toad on your patio, the magenta pansy smiling from the garden border? A stone? A tree? A path? The planet? Angels?

I feel friends with everyone and everything, and I always have. 

But this doesn’t seem to be the common definition of “friend.”

A 2013 study by Gael I. Orsmond, Paul T. Shattuck, Benjamin P. Cooper, Paul R. Sterzing, and Kristy A. Anderson, funded by the National Institute of Mental Health, found that:

– almost 40 percent of youth with ASDs never got together with friends;

– 50 percent never received phone calls or were invited to activities; and

– 28 percent were socially isolated with no social contact whatsoever.

(as ctd. in Heasley, “Study: Nearly 1 In 3 With Autism Socially Isolated“)

Though I’m not a youth and haven’t received an official diagnosis of autism, I fit the remaining criteria for the first two categories: I never (or very, very rarely) get together with friends, and I never (or very, very rarely) receive phone calls or am invited to activities. I don’t consider myself socially isolated because I live with my boyfriend and, Monday through Friday, I interact with five to twenty people daily at my place of employment.

However, a review of the study in disabilityscoop, interpreted social isolation in this way: “almost one-third of those with autism qualified as socially isolated because they never received telephone calls or went out with friends.” I haven’t tracked down the study (only an abstract was available for free reading online), so I don’t know if that’s the definition the authors provide; but it’s the definition used by the reviewer.

So here’s a spot of significant cognitive dissonance in my life. I was born feeling connected to everyone and everything. This state of unity which yoga practitioners yearn for and practice a lifetime to achieve has been my birthright and is always available to me. I feel I am friends with everyone and everything on the planet–we are all cells in the same system, right? And yet, by common standards, I don’t have friends and may even be considered socially isolated.

Yet how can I feel isolated? I am connected to all-that-is, and this connection never leaves me. On my own terms, looking within at the state of my spirit and soul, I am healthy, whole, resilient, well-adjusted, and lacking nothing. I live in the full abundance of energy, of life. 

“Difficulty navigating the terrain of friendships and social interaction is a hallmark feature of autism,” states Paul Shattuck, in a widely quoted interview about this study he led (as qtd. in Heasley).

It depends on how you define friendship, I suppose. 

I am only lonely when I try to fit my social interactions into a standard definition of “friendship,” and I’m not even sure what that means. When I operate within my own lexicon, I am never lonely. I am never even alone, for always, there’s a breeze, a sound, dust motes, sparkles of light, a leaf, a cricket–always, there are friends.

Works Cited

Heasley, Shaun. “Study: Nearly 1 in 3 With Autism Socially Isolated.” disabilityscoop. 8 May 2013. www.disabilityscoop.com/2013/05/08/study-socially-isolated/17905/. Accessed 30 Nov. 2018.

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Spectrum: Yellow Flags across the Finish Line

photo of CT standing by flags

What I’m Trying Not to Do Here

I’m not writing these entries to complain, and I’m not soliciting sympathy or attention. I’m well aware of my privilege: I’ve been able to craft a successful, fulfilled, rich life largely because I’ve started out high up the ladder. My family, like most American families, is mixed-race; but for the past hundred years, we’ve been perceived as white. (It was only recently that a cousin’s DNA test revealed our African heritage–not all members of our extended family are aware of or acknowledge our ancestry.) During my childhood, we were lower middle-class, and money was very tight, but we had a home with wildlands across the street, and we never had to skip a meal. We lived in a culturally rich area, and my well-educated parents, both teachers, valued the arts, reading, music, nature, and physical activity,  so we went to museums, concerts, and plays. We hiked, swam, camped, and skied. It was a rich upbringing that gave me, maybe, my best possible start. 

So, I’m not complaining. I’m not looking for pity, and I’m certainly not trying to make it out like I’ve had it tough or that life has somehow wronged me. I’m not broken: I’m blessed.

 What I am Trying to Do Here

This is a very personal project, undertaken for a very personal goal: The reclamation of those bits and pieces of me that I shoved into the seamless pocket because they didn’t fit the profile of a neurotypical person. Many of these pieces are wrapped in layers of pain, shame, or humiliation, so while I unwrap them, it’s likely that my hurt will come through my words. 

This isn’t a cry for sympathy. It’s a laying-out in the sunshine, so that these pieces can sparkle again before I stitch them back into the quilt that is me.

Dreaming of the Race

Before dawn this morning, I dreamt that I was in a race with four others. Two started before me, and two after. I didn’t know the rules of the competition–I wasn’t given the rulebook, and if anyone explained them to us, I neither heard nor comprehended. I was simply expected to compete and to do my best, figuring it out as I went along.

We were to race every day for five days, though I didn’t know that until the end of the event. 

On the first day, I just ran, watching, and seeing what was expected.

At the end of the race, we were served lunch with all the other participants. Those in my group were given something different than the others, but it was OK because we liked the food.

After a few days, I began to figure out the rules. Apparently, I was supposed to pick up sticks that the others dropped. They each dropped two sticks, so I was supposed to pick up eight. And finish first.

By the fifth day, I was ready. I knew the rules and what was expected. I’d worked out my strategy. I was ready to compete. 

But on this day, the two participants slated to start before me decided not to race. They’d already won, so they didn’t need to take part. This meant that there wouldn’t be enough sticks for me to pick up. But one of the participants who started behind me said that he would drop extra sticks, and I could find the remainder scattered about the dirt track. It meant that I’d need to let the boy behind me get ahead, but if I were smart, fast, and clever, I could do that and still meet the expectations of me. I had to be creative and strategic, but I managed to succeed, thanks to the help from my friend. Yet this race didn’t count because the other two hadn’t participated.

That day, after the competition, our group wasn’t served lunch. The three of us stood in line, but there was no food for us. The servers whispered to each other, and one of them went back to talk with the manager, and the three of us were directed to sit at a long table with the diners. No one explained why we weren’t served food, though there was a lot of gesturing towards us and a lot of whispers. Eventually, one of the supervisors came to say that the three of us wouldn’t be eating that day.

By now, outside of the dream, it was nearly time for me to wake and begin preparing our breakfast, so I was hungry! In the dream, I left the dining hall, realizing I needed to be responsible for meeting my needs and caring for my two friends. I walked outside, through the alleys, to the food court, where too many stalls sold too much food and too many scents of cinnamon, fried meat, fried dough, coffee, and fruit filled the air, the air particles jostling with the sound–so much sound of talking, shouting, brass instruments, a trolley car, a bongo drum, the hum of electric fans, the honking of horns. With all the focus I could muster, I screened out the extra stimulation, and zeroed in on my task: Buy something I could eat. Buy something my two group-mates would like. Across the crowded food court, I spied a rack of cinnamon empanadas. Those would do.

When I woke, I realized this dream represents my experience of what it’s like to live as a neurodivergent person in a neurotypical world: I’m expected to compete in a social and professional world for which I haven’t been given the rulebook, and by the time I’ve figured out the rules, the conditions have changed, others have moved on, and I need to rely on the help of those who remain, combined with my own creative and strategic skills, to finish the event. And by then, it’s the last day and the results don’t count, anyway.

About fifteen years ago, after a successful performance evaluation, I asked my supervisor, whom I really liked and admired, what specific skills I should work on. She said that for my current position, there was nothing to improve: keep doing what I was doing, learning and growing. However, if I had my eye on her position, if I wanted to take over as the school district’s IT director in a few years, after she retired, she could make some suggestions for what I might learn. I felt flattered that she thought, with a few more skills, I could be a candidate for her position. I also knew, without needing a moment to consider, that this was not a career move I was interested in. It required more of a trade-off than I was willing to make, and I’d be left with no time or energy for my own personal creative endeavors. Later, as I mentioned my supervisor’s comment to a counselor, I felt a twinge of sadness–not exactly regret, but grief. I couldn’t, then, place its source. But I know now: It’s because I realized, on some level, that I lacked the capacity for that position. Sure, it was the best decision to maintain life-balance not to pursue such a demanding career. But I think I knew, too, that I didn’t have the capacity to manage a large staff, to coordinate complicated plans involving the labor of hundreds of people and impacting tens of thousands (it’s a very large school district), and to interact regularly with a fractious board. I knew this task was beyond me.

I’ve stayed at the same position I held then. It’s been… close to perfect. I love my tasks, which are detail-oriented, regular with a few interesting changes, sometimes challenging, generally fun, and which serve a purpose I can support. I’m the web editor for the school district’s website and Intranet. I’ve been able to create my own work schedule, reducing my hours to 30 per week, in order to enjoy long quiet mornings, each day, before I head into the office. Sometimes, the conditions change, and I’m left scrambling for a few weeks or a month to locate and decipher the new rulebook, but generally, the same old rules come back into play, and I’ve got teammates who will drop a few extra sticks for me. I try to look out for them, too.

It’s possible to thrive as a neurodivergent in a neurotypical world. For me, it takes using my creative and strategic thinking–and it also requires that I don’t allow myself to fall into societal expectations. I need to learn to define success my own way. For me personally and individually, being a web editor is far more successful than being an IT director. You know, I might complete the race and then have to go find my own empanadas. And maybe the race won’t count to anyone but me and a few others, those who look out for me and whom I look after in return. But I think, maybe, I like it that way. I kinda like inventing my own success as I go along. 

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Spectrum: Red Pomegranate Sepals

Picture of CT looking at things lined up on the kitchen counter

A few years ago, my mom told me that the grandson of her husband (not my dad, but the man my mom married after my dad passed on) was being diagnosed for autism. 

“And you know,” she said, “many of the symptoms that this little boy has which lead to his being diagnosed are things that you did when you were a toddler.”

I didn’t ask what those were. It was a phone conversation, and you know. The Phone. I couldn’t see my mom’s face–because it was a phone conversation–and I couldn’t tell what her voice meant. So all I could say was, “Uh-huh.” 

And after I hung up, when I went into the garden, as I always do after I talk to my mom on the phone, because The Phone… and My Mom… Anyway, after I walked around the garden for a while, and got my breath back and my heart to slow down and was able again to feel the earth beneath the soles of my feet, and when I heard the goldfinches sing and saw the marigolds in bloom, then I stopped to wonder: “What were those same behaviors that I did which would, these days, lead a child to be diagnosed for autism?”

I was a toddler in the early 1960s. Back then, little was known about neurodivergence. Children were generally not diagnosed unless they had significant challenges speaking, learning, and functioning. I had enough trouble speaking that I went to speech therapy when I was in second grade, but my parents and I were led to believe it was related solely to pronounciation: to my “lazy R.” 

I met with a psychologist for testing the summer before fifth grade, but this was to test into the gifted program. I was so worried before this. I think, on a deep level, I knew then that I was neurologically different. I was very much afraid that it would be discovered that I was mentally deficient in some way. I knew I was socially deficient, and I had a feeling that this psychologist would uncover what was “not right” about me, and that it would be something dismally wrong. It was my older brother and sister who were the smart ones, and this was some mistake that would uncover what else it was that made me different from all the other kids.

Then my mom mentioned that she didn’t give much stock to IQ tests. “It’s all dependent on socio-economic status and privilege,” and when she explained what that meant, I felt ashamed and a little horrified that, because my parents were educated and took us to museums and concerts and filled our bookshelves with Classics and gave me art lessons, I would score well on a test that another child, whose parents had to spend all their money on food, might not do so well on.

When the psychologist asked me if I knew the meaning of the word “ochre,” and I replied, “Do you mean ‘ochre,’ the mustard-like color, or ‘ogre,’ the ugly troll-like monster?” and he said, “Ochre the color,” and I replied, “Yes, I know what it means,” I felt that I had to qualify: I only knew what it meant because we had friends who had a golden retriever named Ochre, and if we didn’t know them, I wouldn’t know what that word meant.

He replied that it didn’t matter how I knew what I knew, only that I knew it, and he smiled. His smile crinkled his eyes, and I liked him at that instant. As we talked and played games, his demeanor toward me changed. He began to treat me with great respect. I felt, then, that maybe being different wasn’t so bad. 

For the first few days when I returned to school, after the test results were in, the teachers treated me with respect, too, and I was placed in the mixed-grade class with older kids, and only a few kids in my grade. For a few days, it was really nice. 

Feeling so healthy and whole these last few weeks, as I’ve been integrating my experiences with my new understanding of myself, I’ve begun to consider that maybe I am not on the spectrum, after all, and I was just identifying with my friends who were. Thinking about writing this post, and beginning it with my mom saying that, as a toddler, I displayed the typical symptoms of an autistic child, I decided to look up those symptoms. I only identified a few that I recalled having. But when I took the online Modified Checklist for Autism in Toddlers, Revised, answering for my three-year-old self, I received a score of 9. High risk. Evaluation strongly recommended. 

So if I were a child now, I’d likely be evaluated.

When I was three, we had huge ornamental pomegranate tree growing outside the window that my bed was beside. Not only that, but it grew over the patio where we sat with our next-door-neighbor, an eighty-year-old woman, single all her life, who was robust, wild, proper, conservative, rebellious, free, constrained, and outspoken–all at once! She was hardly typical in any way.  I spent many happy hours sitting on the cement pavers in her patio, listening to the conversations of my parents and siblings with her, their voices low and soft and gentle, mingling with the chatter of house sparrows and the chuckles of pigeons, while I, happily on the outskirts, lined up the fallen pomegranate blossoms, their fleshy red sepals facing me, and their frilly, fancy stamens facing the hedge. When they were all lined up, I would turn them 180 degrees. These afternoons could never last long enough for me, and at night, when I sat in my bed looking out the dark window, I reflected that, even though I was now inside, the tree still stood in that exact same spot, and the lines of blossoms still kept their rows. 

I still love to line things up. One of my greatest joys comes every morning when I reach into the cupboard and lift down the small white plate to put in the corner of our near-black Dekton counter. A lemon and a lime, sliced in half, will go on that plate, every morning. Then, I bring down the yellow mug that holds our forks, spoons, knives, and the stainless steel chopsticks I use for most meals. The cutlery mug goes right in the middle of the long counter, near the back-splash. Then, the cutting board and the paring knife, everything arranged just so. As I complete these acts, feeling the solidness of ceramics and metal in my hands, feeling the symmetry of everything in its place, I feel the soles of my feet on the hard tiles, and I feel how sweet it is, to be home, to be alive, to be able to do this same simple act every morning.

Life becomes a sacred ritual.

I love to hang laundry on the lines to dry, especially the dish-towels, which I hang by category: striped, greens, oranges, the flowers, the owls. Each towel shares the clothespin with the towel next to it, and that sharing, for some reason, brings me such joy. It’s part of “everything fitting.” The mountains stand behind our garden, and as I hang the dish-towels, I feel them smiling at me, and I smile back. 

I wonder if neurotypicals feel friendship, like this–to an extent that becomes kinship–with mountains, towels, clothespins, and red pomegranate blossoms. 

I like to line things up, and in the ritual of the line and the right place, in the sacred act of making things fit, that’s where I find friendship with the things around me, the things that make up my life. 

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