The more we share, the louder our collective voice. That is where storytelling comes in. Stories build communities and create tribal knowledge. Stories connect us to each other. Stories tell truths that the shamers and oppressors cannot hide. Stories are forests, like natural disasters and political upheavals, and stories are trees, like these hero tales from Hurricane Harvey and these brave young activists who are changing the world with their grit and positivity.

Those who are trying to quiet our voices are loud. We can be louder.

Here are my stories about how I perceive, experience, and interact with this beautiful world through my neurodiverse, autistic senses.

Oh, and why the snail? I LOVE snails. I always have. They are such deliberate, perseverant beings. They get to carry their snug little houses on their backs, like coiled weighted blankets. They leave a pretty shiny silvery trail — if I could do that, maybe I wouldn’t get lost so often! They move at their own pace and apologize to no one. And they are just so darn cute, with their plump little eye stalks and chubby little feet.

If you do read my blog, please know that I am very honored and appreciate your time. I love comments! ūüôā

© 2017 Saraswati Chand

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Body Talk

In the late 90s, I had a black cardigan that I wore when I went out at night. It was synthetic, ribbed, and had gold tinsel woven into it to make it sparkle. I would wear it, my curly hair pulled up in tiny clips with butterflies or dragonflies, my lips and lids burnished, glitter shining on my cheeks and cleavage. 

I’ve known for a long time, about twenty years, that I have trouble recognizing,¬†identifying, my feelings. After a series of suicide attempts in 1999, I moved across the country for graduate school and began therapy in earnest. My therapist, whom I saw twice a week that first year, gently encouraged me to describe my feelings instead of “storytelling”, which she suspected was my way of deflecting from my pain.

I would try, answering that I felt “upset” by any particular situation. For instance, I was upset when the wife-half of the married couple I was dating chastised me for wanting to celebrate our successful poetry readings at home with her and the husband-half. She wanted to celebrate at a bar with our classmates and told me that by not joining them I was not being a good friend, even though I dislike crowds. Likewise, I was upset when one of my professors told me that I was not ready for graduate school and she didn’t understand why I was there when I couldn’t even make it to class on time.

When my therapist would coax me to examine my feelings further, reminding me that “upset is not a feeling, it is a reaction”, I would sit silently as the seconds turned into minutes, biting my lip and staring at a white wall in my head.¬†UPSET UPSET UPSET¬†ran across it in a banner. My therapist would wait patiently. I would finally look up and say, shrugging my shoulders, “I don’t know. I feel upset.” And she would ease away from that pressure and listen to the next tale I had to tell, perhaps the one about the department head sliding his hand under my shirt as easily as flipping through a book, or my boss kissing me under a tree in the moonlight and whispering, “I have dreamt of embracing you here so many times” while I swooned.

That black cardigan I wore was everything uncomfortable: from the relentlessly scratchy tinsel to the stretchy synthetic material that was most-definitely-not-cotton to the elastic ribbed cuffs and waist that felt as tightly cinched as a corset and left marks on my skin. But, when I wore it, I “passed”, moving seamlessly into that outside world. When I would blunder, this cardigan was my get-out-of-jail-free card.

It allowed me to flash a girlfriend to prove that I was going commando just like Joey did on “Friends”.¬†At least it did the the first time, as that cardigan and I created an image of a spontaneous free-spirit. When she responded positively, I flashed her over and over again — a soft, sensational breeze flowing up my legs with each flap of my dress — until finally she put her hand over mine and said, “I get it, and it is sexy, but enough.” Still. The cardigan and accouterments¬†gave me some leeway in social situations, so I wore it despite the intense unpleasantness.¬†It was as though the cardigan was the deflection, the sparkles reflecting back images instead of revealing the me inside.

I eventually began using some fallback terms to describe my feelings: happy, sad, mad, scared, anxious, frustrated, lonely, misunderstood. But, there were no nuances. No blissful, wistful, resentful, terrified, panicky, exasperated, abandoned, misled. As the years have passed, the luster on the fallback terms has worn off from repeated use, and what I am left with is even simpler. Comfort and discomfort.

The feelings I feel all come down to those two sensations. I don’t actually know what happiness is, just as I don’t know what sadness is. I can use those terms upon reflection. How many times have I said to Adrian or my therapist, “I think I was feeling anxious about _________.”? In the moment, however, I think to myself “I feel comfortable” or “I feel uncomfortable.”

When I imagine happiness, I imagine sunshine on my face. But, when the reverse happens, when I step outside and¬†feel sunshine on my face, I don’t think “happiness”; I think “comfort”. When I imagine sadness, I think of my mother who died several years ago. As I cry about my mother’s death, however, I don’t think “sadness”; I think “discomfort”. My body is overwhelmed and tears start pouring down, my shoulders sagging, breath hitching. It is a kind of exorcism, an expulsion of that discomfort.

When I would reach whatever destination I had, be it a party or bar, I would immediately take that black cardigan off, draping it like a sommelier’s liteau over my forearm. The discomfort would then be minimized to a small section of skin, rather than my entire upper body, the back of my neck included. The eventual happened. I left it behind one night after a concert, either at the the venue where Sting performed or the restaurant we had gone to earlier.

By the time I realized I had lost the cardigan, the venue was closed, as was the restaurant. I stared through the plate glass window, smooth beneath my forehead and forearm, moaning, “It isn’t here,” just as Linus did while searching for his beloved blanket.

It isn't here.


Why did I want that cardigan back when the way it felt against my body required that I lotion extensively and later only wear the softest cotton to soothe my raw skin and nerves? Because it was the identification card that proved I was “okay”. Without it I was … uncovered. And when I grow attached to something, losing it feels like losing a part of myself, even if that part is an oppressive mask.¬†

A few evenings ago, I told Adrian that I felt lonely. He stood half in my doorway and half out, because he was in the middle of eating his dinner and, after refilling his water glass, had stopped by my room to see how I was doing. I had pulled my groin muscle in my boxing class and even readjusting in my bed was painful. Ours was supposed to be a quick interaction, maybe accompanied with a request for ice or massage before bed. But now Adrian was trapped. I could practically hear him wondering if he could actually leave after I made an announcement like that. A frozen moment passed and then I said, “Go finish eating. It’s okay.” And it was okay, because this wasn’t about his response; it was about how I felt.

After he left, I couldn’t take it anymore and cut my nails. They had grown to just the tips of my fingers and they dug into my palms, dragged along my bedsheet, and tapped on my keyboard as I typed.¬†Argh! I thought.¬†It feels so icky! After filing them, I felt instantly better. I put an ice pack on my pulled muscle and tugged my oversized hoodie over my chilled body.¬†Aahhhh, even better.¬†I changed socks — the ones I had on were mismatched, one too tight, the other sagging at my ankle. I felt comfortable. I laughed a little.

“Adrian!” I called out. “How could I be lonely? You and I had Family Time just last night and Loverne and I went to the movies earlier. I am so sorry. Sometimes I can’t figure out how I feel.”

Later that night, I read from I am AspienWoman: The Unique Characteristics, Traits, and Gifts of Adult Females on the Autism Spectrum. One woman described having, as part of her sensory processing disorder, interoception struggles. Interoception? I wondered. I knew about auditory, olfactory, visual, tactile, and gustatory. I had only heard of five senses. What is this interoception?

Of course, being the autist I am, I researched it immediately and comprehensively. I first learned that there are eight senses, the ones I named above plus interoception, proprioception, and vestibular. I next learned that sensory processing sensitivities are not limited to sensory discrimination. When we are in the car and Adrian is talking while the radio is playing, I have a difficult time discriminating one sound from the other. It is all white noise to me. That is sensory discrimination sensitivity. There are two other patterns, however, one with modulation (regulation) and the other with motor skills. Each of these patterns has at least two subtypes, leading to hundreds of thousands of variations and combinations of sensory sensitivities! Below is an infographic that breaks down the patterns and types. This page describes each of these patterns and subtypes in wonderful detail and helps provide great understanding of sensory processing.




While I am still learning about myself and the various ways my sensory sensitivities present, I immediately identified with interoception, both with under-responsivity and over-responsivity. I don’t notice when I have burned myself and even ended up with a second-degree burn at one point. I also didn’t realize that my sparring partner had missed my kick-shield and chipped my bone until days later when a bruise crept up my shin and down over my foot. On the other hand, the moment I feel the slightest heaviness in my bladder and bowels, I must evacuate them otherwise I cannot concentrate on anything and I feel fluttery and clenched at the same time.

The Interoception System


What if, I pondered,¬†the feelings that I identify as “anxiety” and “frustration”, or, perhaps more accurately, “discomfort” are related to my interoception sensitivities?¬†

Now, I do have anxiety, especially when there is change to my routine. But, maybe some of my anxiety is actually my inability to recognize my own body’s signals. And what about vice versa? Maybe I would be able to identify the anxiety more quickly if I could recognize my body’s signals. Same with pain, hunger, sickness, frustration, and all of the other sensations that lead to discomfort.

I never did find that cardigan again. I mourned it, obsessively shopped for one that resembled it — to no avail. It had long since gone out of style. I had to morph, find a new mask. It was easy enough. I was studying in a warm, tropical city, where my long petticoats and loose curls suggested an exotic sensuality that I easily fulfilled. I preferred multi-partner relationships, in which I didn’t have to bear the burden of being one-half of something. I couldn’t handle the pressure nor could I provide the balance due to my need for solitude. The new look also provided comfort: cotton against my skin, no visits to the hair salon. Now when I blundered, it was acceptable because I was unconventional, quirky, and independent. While still a mask — I am not, after all, exotically sensual so much as I am cosy clothes and solitude — while still messy, this was, in some ways, easier to wear.

I had told Adrian that I was lonely and then had cut my fingernails, iced my muscle, and put on warmer clothes. After that, I felt instant comfort.¬†Hmmmm …¬†I began putting the pieces together. How about last month when I cried because I was “so stressed out”? I hadn’t eaten in almost ten hours, had been working at the computer all day, and hadn’t had my usual cup of afternoon tea. With Adrian’s assistance, I ate my everyday sandwich, sipped my Indian tea, and the stress just floated away.¬†Hmmmm.

I decided to come up with a method in which I can better identify my emotional and physical responses and what I can do to self-care. I ordered six sets of flashcards with rings and fun labels (these are the products I purchased; I do not receive any compensation from the companies that provide them). I then named each set of cards using the labels:

  • I Feel (Emotionally)
  • I Feel (Physically)
  • I Need
  • Please Will You
  • Missed Routine
  • Not-Routine

I filled in the blank flash cards of each set with responses. Some examples:

  • I Feel (Emotionally): anxious, lonely
  • I Feel (Physically): tired, hungry
  • I Need:¬† exercise, company, sleep, to eat
  • Please Will You: lie on me, spend Family Time
  • Missed Routine: morning ablutions, green tea with special mug, meditation
  • Not-Routine: social engagements, doctors appointments, guests, workers in house

At least once a day, and whenever I feel “weird”, “anxious”, or, as I am trying to recognize it, “discomfort”, I go to my flash cards and try to find sources and solutions. The process¬†might look like one of the following:

  • I Feel (emotional): anxious –> Missed Routine: meditation –> I Need: to meditate
  • I Feel (emotional): anxious –> Not-Routine: going out to dinner –> Please Will You: lie on me for five minutes before we leave for dinner
  • I Feel (emotional): misunderstood –> I Need: quiet time for five minutes –> [five minutes later] I Need: to be heard –> Please Will You: listen to me, give me your undivided attention
  • I Feel (physical): clothes are too tight –> I Need: cosy clothes
  • I Feel (physical): food against front teeth –> Missed Routine: cutting apple, using small ramekin –> I Need: to cut-up apple, put apple pieces in small ramekin
  • I Feel (emotional): frustrated –> I Feel (physical): cold, stubble scratching against my cosy pants –> I Need: a hot shower, to shave

I have only been using these cards for a few days, but they have already had an effect. I feel steadier, more in touch with my physiology, more-in-the-moment with it. Just as I traded in that scratchy, stretchy, synthetic cardigan for softer, looser, cotton skirts, I have found a coping mechanism that will hopefully help me understand myself better and maneuver through the world with more comfort, as well as stop me from mislabeling my feelings, which can lead to meltdowns, accusations, and self-loathing.

This procedure forces me, ironically, to step out of my comfort zone. After all, accurately identifying what is causing the discomfort can cause discomfort in and of itself. Acknowledging the unfathomable depths of my sensory sensitivities has been humbling yet empowering.¬† Missing my mother, feeling misunderstood by Adrian, being¬†dismissed and ridiculed by Dr. Devell¬†during my formal evaluation — these are painful experiences.¬†Sitting with that discomfort¬†— accepting my sensory needs and their far-reaching effects, allowing myself to cry or express my perspective or end an unhealthy therapy — can all help me process and move to a place where I feel sunshine on my face again.

And, I keep in mind Carrie Fisher’s words: “My comfort wasn’t the most important thing – my getting through to the other side of difficult feelings was.”



© 2018 Saraswati Chand





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Hear Me Roar

My parents had an arranged marriage in India and then my mother moved with my father, whom she had known for a matter of weeks, to North America. She decided that instead of practicing medicine (which she had studied to do), she wanted to be a homemaker, and she did so with pride. My father worked approximately sixteen to eighteen hours a day. My mother worked twenty-four.

She would cook dinner for us every single night.My sisters and I would eat with her and then, after homework and thirty minutes of television, we would all go to sleep. When my father came home, most often at midnight or later, my mother would rouse herself and sit at the table, silently serving my father his food. He would chew noisily, read the mail or his journals, and grunt when he wanted another serving, lips smacking and slurping, liberated from the restraints of social etiquette. He was, after all, only eating in front of my mother.

Family lore has it that my mother was “brave” for leaving everything she knew behind and moving with her brand-new-just-out-of-the-package husband to a continent halfway across the world. Her job was to make sure that he had all of his needs met, since he was the one who “worked so hard”. My father, also a physician, was on-call a lot. My mother was on-call all the time for everyone but herself.

Fast forward thirty-five years and picture this: Adrian, getting up from his chair to help me strip his sheets. He happened to be home on the day that I change the bed clothing. It was morning and the sunlight was haloed around him, warm and clean. He mentioned that the mattress cover should be washed. I told him that I do wash it every other month, but he had already pulled it off.

I said, “Okay, I can do that, too.”

“That’s sweet, but I can do my own laundry. I am home after all,” Adrian said. I work from home and I enjoy housework, so I usually take care of that aspect. My husband works about eleven hours a day plus the commute. We both work very hard.

“Nah, I have a system.” I smiled at him, though I could feel ripples of unease spreading inside my abdomen.

He looked at his bared duvet and wrinkled his face. “I wonder if I should get a new one.”

“I usually wash these two to three times a year. I also air them in the sun and spray a little lavender on them to refresh them in between washes.” Washing a duvet is a time-consuming effort, so I usually plan far in advance for those. I added his to the pile.

Now I was out of routine. Those ripples became a whirlpool, sucking me down. As I went through my day, it felt as though my homunculus was crouched just inside my ear canal with his hands on either side of his mouth intoning, laundry laundry laundry laundry laundry.

Several hours later, I was still drying the duvet, readjusting it every fifteen minutes in the dryer, tennis balls bouncing in the machine like booted feet stomping around the house (the tennis balls keep the duvet from rolling into a ball). It was after eight o’clock. My rule is to stop laundry at five pm, because then I can turn my attention to cooking and planning for the next day.

I had a meltdown.

“Adrian, I have to start saying no to things. I just kept adding to the laundry and now it is late and I am overwhelmed. I have a system.” I tried to blink away the tears, but they are as much a part of my meltdowns as my higher-pitched, dysregulated voice.

Adrian’s eyes widened in surprise (at least I think it was surprise!). “I can finish the laundry, baby. It’s no big deal. I am glad you are understanding what you need, but at least this is recoverable.”

Now it was my turn for wide eyes. “But that is the point. It doesn’t¬†feel recoverable. The whole system broke down. I am going to bed late which affects my morning routine and … we still have to make the bed.”

Okay, so we are making progress. Adrian sees that what is recoverable to him is not to me. I didn’t realize that I was so good at hiding it.

Let me repeat that: I didn’t realize that I was so good at hiding it.

In the fall of 2017, a few months after I discovered that I am autistic, the #MeToo movement began to swell. The purpose is to demonstrate the magnitude and degree of sexual assault and coersion that people, mostly women, have experienced, especially in the workplace. I began to hear people ask questions like, “Why didn’t she just walk away?” and “It’s been twenty years — why didn’t she tell anyone sooner?”

And then I read this stunningly bona fide article¬†that answers those very questions. I hope you find time to read it, because I will not be able to do it justice with any kind of summary. I offer you this quote by Lili Loofbourow: “At every turn, women are taught that¬†how someone reacts to them¬†does more to establish their goodness and worth than¬†anything¬†they themselves might feel.”

Was my mother “brave”? You bet your ass she was. But, she was also always uncomfortable. Why did she have to get out of bed in the wee hours of the morning to spoon food on my father’s plate while he masticated with his mouth open, the food churning inside like laundry in a washing machine, while he read and grunted and never said thank you? Because it was never even in question.

Why did I break my routine and wash the mattress cover and duvet? Because I was trained from an early age that everyone else’s comfort is more important than mine. I was taught not to express my needs, such as hunger, downtime, help with schoolwork, because that was¬†complaining, that was being¬†ungracious.

There is a BIG difference between the #MeToo movement and my marriage. Adrian is not¬† violent or coercive or manipulative or aggressive in any way.¬† He is kind, compassionate, encouraging, and independent. He does not expect me to do his laundry or serve him food, let alone have sex when I don’t want to with the threat of brutality or duty or intolerably painful blue balls hanging over me like a guillotine. And when I do the cleaning and the cooking, he always says “thank you” and/or “I love you” and/or “I appreciate you”.

So why was I still making myself uncomfortable? I thought about this for about a week. Why do I say, “okay” all the time, when what I am feeling is “uh-huh, no way”?

I began to change my behavior. Last week, I made vegan meals for both of us. Usually, I make vegan for me and omni for him. But it is becoming increasingly more difficult to purchase and prepare meat dishes because what I see and smell is violence and terror. I do not see a package of chicken thighs. I see three animals who were slaughtered and dismembered, who had been scared their entire lives. I have to pause while even typing this to cry about how much pain these innocent creatures experience.

I didn’t tell Adrian my plan because doing so would almost be akin to asking him permission, to getting the assurance that I knew he would offer. This wasn’t about Adrian and his unconditional support. It was about me and the choices I make to provide for his happiness (or my perception of his happiness) at the expense of my own. I wanted to sit with it for that week. I wanted to see if I would apologize or explain, feel guilty.

I had so much fun cooking last week! Because I wasn’t making two separate meals, I was able to create elaborate dinners: tomato, sausage, and cream farfalle; veggie burgers that were smoky and sweet from the grill; a rich and melty cheese for our black beans and rice. Adrian enthusiastically praised my cooking as he always does, appreciating my hard work and creativity. He later told me he didn’t even notice the change.

At the end of the week, after a particularly insightful therapy session, I apologized to Adrian for, over many years, having actually repeated the following: “I do things that are uncomfortable because those things make you happy. Why can’t you do the same for me?”

Yep. I said those words. Again and again.

After apologizing, I explained to him that the sentiment came from a place of genuine bewilderment and hurt. I was trained that love meant being uncomfortable and I couldn’t understand how he could say that he loved me and still choose his own comfort. I wasn’t testing him or resentful … I just didn’t know there was another way.

I then smiled at him and said, “But you never even¬†asked me to do those things! I did all of that on my own. You always knew — love means being able to be honest about our needs and supporting one other as we each climb our own mountain.”

And that got me thinking about “female autism” vs “male autism”, which, incidentally, does not have to be gender specific. The very notion that girls are trained from out of the womb that their comfort is always secondary provides quite a bit of insight as to why our autism often isn’t diagnosed sooner … or even at all.

When my grandmother braided my hair, her touch light and hesitant on my tangled curls, that gentle brushing literally made me gag. I learned the very first time that I was to sit still and be quiet with a smile on my face. I would go in the bathroom when she was done and roughly push my hands through my scalp, pull on my braids hard as possible to erase that soft touch. I would gag and sometimes vomit, but always always in private.

During primary school, my mother would arrange playdates for me with one of her friend’s daughters. I hated those days … I knew about them in advance and recoiled at the thought of my beloved afterschool routine — cosy clothes, snack, “Flintstones”, playing in the desert, reading and writing — being upended. I hated having to socialize, especially after having been at school all day. I didn’t know how to play like other kids and I didn’t want to learn, either. Still, the one time I told my mother I would rather not play with Alice anymore, she said, “But, Alice is your friend. She likes to play with you. You hardly ever see her, anyway. It’s only one afternoon.”¬†It took about three years, and an increase in “sullenness”, stillness, and silence, before the playdates were abandoned. Of course, I was chastised for being impolite and selfish, though my “sulking” was not intentional; it was borne out of a self-preservation, a need to turn inward and survive.

Even after expressing my dislike for slimy foods, like mushrooms and kerala, I was forced to eat them. I was shamed out of my cosy clothes on the weekends because it was lazy to wear them all day long. I needed to sit with my parents’ friends and ask them questions and answer theirs with enthusiasm — gestures, smiles, and head nods that I would practice in front of the bathroom mirror. I would plan these conversations out:¬†Okay, I will ask three questions and answer one. Then I will be free to go to my room.

I used mimicry in those situations, spouting off wisdom that I read in articles and pontificating about topics that held no interest for me. Of course, I still missed social cues, one time repeating a classmate’s rant about how clothing labels lead to class divisions in school, “like with Guess. All of their clothes have “Guess” written across them. Only the rich, spoiled kids wear those. That’s how they can tell who can be in their little clubs.”

In reality, I cared very little about social dynamics, wasn’t very aware of the cliques in my junior high, and clothing for me was always about comfort first, bright colors second. But, if I was forced to make conversation, this was as good as any I had memorized. My mother reminded me later that her friend’s daughter, who had also come for tea, worked for Guess and pointed out that she had been wearing a Guess shirt at our house. I can still envision it: a cropped white t-shirt with “Guess” scrawled across it in pastel pink cursive.

I laughed and shrugged, not really caring because all I had wanted to do was focus on the stories I was writing and not waste one more second on this social stuff. Besides, what I said was true. I was made to apologize, which I had to do over the phone, another vehicle of discomfort for me.

I remember holding the receiver in both hands, pressing it hard against my ear, as if that would help me know when it was my turn to talk. My breath was hot and moist as I whispered, “I am sorry. Sometimes I talk without thinking.” That was something I had heard repeatedly and finally believed about myself. In reality, I am always thinking.

At every turn, when I tried to communicate that I was uncomfortable, the message I received in response was that I had to grin and bear it. I even had a Garfield bookmark that stated those very words!¬†No wonder I was not diagnosed earlier! And no wonder I struggle with a formal diagnosis now. I am an expert at being the “good girl” so that when I retreat to my bedroom, my sanctuary, I can be left alone to cry, to write my stories, to daydream, to wear what I want, to talk to no one, to read and escape.

If girls and women are subtly trained early on that their discomfort is to be expected … how much more profound is that directive when it comes to autistic girls and women? So many of us are actually¬†told how our behavior needs to change because it makes everyone else uncomfortable. We are¬†told that we should make¬†ourselves uncomfortable for the sake of everyone else.

  • “I know you want a party — people want to celebrate your birthday with you!”
  • “That dress looks pretty on you. You don’t hear your sisters complaining that¬†theirs are too scratchy.”
  • “Stop fidgeting so much. Why do you keep moving your hands around? It’s distracting.”
  • “You can talk to your aunt for at least a few minutes. All girls love talking on the phone.”
  • “Let me pull your hair back. Why do you keep covering your face with your hair?”
  • “Once you get there, you will have fun with all of the other kids.”
  • “You need to spend less time in your room and more time with the rest of us.”
  • “You spend more time with your bugs than you do with people.”
  • “Put that book down.”

Well, no more. Now I say, when meeting someone new, “I don’t shake hands,” and I offer no explanation because I don’t owe anyone an explanation. Now, I don’t force myself to engage in exhausting conversations with confusing social mores. I don’t apologize for not knowing anything about current pop culture because I only watch the same television shows over and over again. I choose to spend my time on my routine and special interests — cooking and writing — and explain that when I decline invitations to lunch or well … I don’t get many invitations anymore, so I don’t have many examples of that!

Here we are, 2018: I am in my forties, I am autistic, and I am going to let my freak flag fly. Because I live in a neurotypical world and I am not a neurotypical girl.



© 2018 Saraswati Chand




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Pictures and Patterns

At the back of my mind, there are three screens, like those found in the drive-in movie theatres of my youth: one in the center and two angled in at the sides, so the whole set-up resembles a trifold vantiy mirror. Here is what is on those screens, twenty-four hours a day, seven days a week, fifty-two weeks a year:

For a quarter of a century, alcohol and shame was a curtain between me and these screens, my constantly churning brain. I had been trained my entire life to believe that my thinking, my intensity, was somehow negative, that it meant I was manic, uncontrolled, obsessive. So, when I became an adult, I dropped the curtain across those screens.  Last year, once I began practicing mindfulness and became alcohol-free, I lifted that curtain and realized that my thinking is my creativity and my guide. It is not to be hidden but to be disciplined.

These screens can be thoughts about anything. I choose. If I don’t decide, they have a tendency to project my darkness. One of them, for example, would default to thinking about how humans treat this earth and the living beings on it. Another could be about how I am a monster, sucking the joy out of the room the way a drain gurgles over the last drops of water.

So, I chose: the screen on the left became my work on my book, the research, the crafting of every sentence, the authenticity of my words, the development of my beloved characters. The screen on the right became my work on this blog, the way I channel my despair and frustrations and inability to orally communicate in a positive, contributing, reflective space. My brain is constantly working on these two projects. When the curtain was down, I had neither book nor blog, and I scrambled to find balance, peace, and self-worth. I would wake up throughout the night, seized with loathing and anxiety. Now, when I awaken at three in the morning, I immediately look at one or both of these screens, and I feel calm, comfortable, productive, excited.

I have read a lot about visual vs pattern vs verbal thinking as they relate to autism. I have found little beyond much appreciated anecdotal evidence that there can be an overlap and wonder how much research has been done on this. For my process, there is definitely an overlap: I am a visual and pattern thinker. When I am working on a section of my novel or an analogy for my blog, I see the scene more clearly than I see the space I am physically occupying. My senses are triggered and I can feel the sun on my skin, hear the wind rustle through leaves, smell the fresh-cut grass, even as I type away in my darkened room.

There are patterns in everything: in nature (shells, ripples on a pond), in language (repetition, rhythm, and rhyme), in music (variations on themes). I also think in patterns, hence the endless games of Tetris. My mind is constantly working to piece the parts together, to find the smoothest, cleanest sequence that connects a to b to c to d to five to yellow to circles.

And this is where the middle screen comes into play. It is always dedicated to planning every minute of and every maneuver through my day and night. I was recently re-reading a favorite book (Reliquary, by Douglas Preston and Lincoln Child). A character who is in a terrifying life-or-death situation finds himself “thinking from moment to moment now, concentrating … because anything else would mean thinking of the horrors …”

I considered that. I have read that stress associated with being neurodivergent in a neurotypical world can bring about a flight-or-fight response, which, in turn, can result in myriad physical health issues, including fatigue, gastro-intestinal distress, and immune weakness. When I reread that passage from Reliquary, the one in which a character is experiencing flight-or-fight, I see the pattern: perhaps I think from moment to moment because I, too, am constantly under a high level of stress, especially when I leave my sanctuary. Perhaps my routine is so soothing to me because it relieves a bit of that moment-to-moment thinking. It is predictable, safe, and controlled, the same tetronimos falling in the same order at the same speed every time.

The Tetris game on the middle screen is about the order of things, from one step to the next. For example, it can be the measures I take to walk Reko:

  • leave the bedroom with mobile phone in hand
  • take walk-bag off coat hook by front door, put phone inside, and carry it to kitchen
  • fill walk-bag with measured treats
  • while in kitchen, move laundry from washer to dryer
  • add dryer sheet and close dryer (do not start)
  • turn on kitchen radio for Ladu
  • while still in kitchen, fill gravy boat with water
  • hang walk-bag back on coat hook on way to Ladu’s bowl with gravy boat
  • pour water in Ladu’s bowl
  • while at his bowl, grab poop bags
  • put poop bags in walk-bag
  • return gravy boat to kitchen
  • walk back to front door and grab shoes of shoe shelf
  • carry shoes and walk through living room from left side
  • sit on couch and put on shoes
  • walk back to front door on right side
  • grab walk-bag and set alarm
  • put leash on Reko
  • walk Reko (this has its own step-by-step process)
  • return walk-bag to hook
  • turn on dryer
  • get new poop bag
  • pick up poop in front yard
  • put poop bag outside back door
  • water plants in front yard
  • wind hose
  • pick up poop in back yard
  • water plants in back yard with can
  • take off shoes and put on shoe shelf
  • sweep — start with my room, then Adrian’s, then den
  • change sheets on Swiffer, sweep living room and kitchen
  • take phone from walk-bag, wipe clean, and put in bedroom
  • put Tide pod on washer
  • put new load in washer
  • put Tide pod in washer
  • start washer
  • wash hands

Each bullet point has a purpose and a place, interlocking with those above and below it to create a continuous, level pathway. Walking Reko is something I do every single day and I still think about the process in a moment-to-moment way. Only, instead of thinking about it in words, I see a game of Tetris, pieces matching up so neatly that the screen looks like this:

Walking Reko


A day in which my routine is perfectly followed looks like this:



Beautiful, isn’t it?

So what happens if I can’t follow my routine?

If the change is planned in advance, say a dentist appointment in a month or lunch with Loverne next Friday, my day will typically look like this:

Tetris Planning


The tetrominos don’t all fit together, but I still can keep playing, stacking pieces and moving through my day as best I can. The gaps are where I deviate from the routine.

But, if there is an unexpected change, such as a neighbor stopping me on the street to talk or a loved one texting to ask if I am available to chat on the phone, this happens:

Unexpected Change


And then, things pile up, and even though I try to find stability …

Game Over


I have to reset and start again. Sometimes that only takes a day … sometimes it can take weeks, depending on how disrupted I am.

But, on a good day, a day in which I am able to move through my routine as smoothly as Gene Kelly dances through his, I am a Tetris genius:

And now that I have pulled that curtain back, I get to play all the time! And I can only improve my game.



6: Tetris Planning:


© 2018 Saraswati Chand

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No Small Change

I love my routine. If someone told me, “You have three weeks to go wherever and do whatever brings you joy,” I would roll those three weeks up into a measuring tape, and dole it out day-by-day, happily following my routine, no unexpected surprises, no deviations.

My day, when I am able to follow my routine, is a chocolate confection, each activity a small square that I savor as it melts in my mouth. I have already set and labeled alarms to help me move from task to task and I feel fluid, strong. I am productive and calm and blissful.

When there is any change, whether it is sleeping an extra ten minutes or talking on the phone, everything halts. That chocolate confection transforms into a thick mud, and I become stuck, sinking the more I struggle. The day is no longer broken up into sweet, luscious bites of chocolate; instead, it is a slick white wall. I can’t climb that terrifying wall. It is too slippery and too tall.

Plus, I am covered in mud, which has no good traction.

Everything is ruined, I think, and try to salvage some part of my routine. I always get some writing in, though later I just have to accept the damage and hibernate in my bed, watching episode after episode of “Frasier”. Then I reset by strictly adhering to my night routine, which sets me up to start anew the next day.

Change is so hard. It is rainfall on a holey roof.

It can be a light sprinkle, like a neighbor talking to me for several minutes on my carefully timed walk with my dog, Reko. It is brief and there is a chance to recover if I move quickly through the next activity.

It can be a shower that lasts for a day, such as when I stop by the grocery store for fifteen minutes on my way home from boxing or when the tree trimmer works in our yard, even though I never interact with him at all. I fall behind and just can’t ever really catch up. Mud. White wall.

It can be a heavy rain that takes days for the ground to dry and for me to recover. This is what it is like when the plumber comes to work¬†inside the house or when we have a dinner guest. I don’t like my things to be touched and I am very territorial about my sanctuary, so at this point, it’s not just my schedule that is being affected. My sense of security and comfort are threatened, as well.

It can be a thunderstorm. That is when we have a guest stays overnight.

There can be some flooding, which requires special care. Things that are important to me are not important to other people, so I will have to spend at least one or two days after they leave cleaning and organizing so my home has order again. People lean against my cooking surfaces with their outside-clothes; they open cabinets looking for extra towels; they stomp through the house in their shoes; they close the toilet lid; they push the sofa out of the way to reach an outlet; they try to pet Reko and Ladu with their feet. They touch my stuff.  Not only is my routine affected, but I am also exhausted from resetting my system.

Change can be a monsoon. For me, with Christmas comes a monsoon season. And Christmas 2017 was one of the heaviest of them all.

It began as a drizzle. In October, we found out that none of the petsitters who had stayed at our house in the past would be available over Christmas, so the company we used assigned us a new one. We were sent a link to her biography and asked to schedule a meet-and-greet. It went from cloudy (just having to arrange a petsitter makes the sun go away) to raining in a split second.

They had already sent us two new petsitters in the past ten months. I eat the same sandwich every single day. Those two statements do not complement each other. Plus I couldn’t schedule the meet-and-greet until after mid-December because that was when friends were driving from out-of-state to leave their dog with us while they traveled abroad. The petsitter needed to meet all the dogs she was watching.¬†I had two months to think about this white wall of a person, this¬†mannequin, to study her internet presence, to prepare for her visit, to be tied to a train track watching that headlamp bear down on me.

The petsitter became the symbol of how everything was going to be different soon.

Change is so hard.

Then, in mid-December, it suddenly became a deluge. First, the friends brought their dog to our home. They stayed overnight. Their sweet dog, Lilac, is part of our pack. But the humans … it doesn’t matter who it is, I struggle with guests. I want them to be like dolls so I can pose them how I want them, around the dining room table or on the couches, tiny little tea cups and saucers on the coffee table, and still feel safe.

The day after our friends left (and I cleaned, organized, and reset), the pet sitter visited. She was like a yellow slicker: practical, efficient, and no-frills. She immediately favored Lilac’s gentle pawing and repeatedly pointed out how Reko and Ladu played more roughly because they were boys. She pet them all, paid attention to my instructions, and seemed competent. After she left, Adrian and I stared at each other. I ventured, “What do you think?”

He said, grinning, “Man, she is going to have a hard time.”

What?! My anxiety catapulted into panic. “Well, maybe I should try to find someone else. I, too, am worried about the dogs. I want them to be safe.”

Adrian furrowed his brow, bewildered. “I meant, she is going to have a hard time with our remote controls. Did you see how she didn’t even want to pick them up?”

The remotes?¬†Although she was no longer a mannequin to me, I still wanted her to be a doll, albeit one who would love my dogs and sea creatures, feed them, snuggle them, and keep them safe. Remote controls did not factor into this. Dolls don’t watch television.

And thus began the treacherous mudslide of catastrophic thinking. Monsoon season had begun.

Change is so hard.

Over the next four days, which, in retrospect, seem to have lasted about three weeks, I slowly became more rigid, as though my very bones and soft tissue were permineralizing and I was becoming a fossil. I worked on my book and ate my everyday food and sat very still, mute. When I could speak, it was with small mouth movements and monosyllables. The future became the white wall, extending in all directions.  The mud became a tar pit, and I was sinking, sinking, sinking.

Any minor observation by Adrian picked me up and threw me across the room, my body slamming against a wall, flopping onto the ground, where I lay, helpless. A simple, “that board on the deck is warping” sent an avalanche of fears through my head: Ladu’s little paw getting stuck between the wood planks, an animal pushing up from under the deck to prey on the boys, the petsitter twisting her ankle.

I would say, “do you think you would have time to fix it before we leave?” as that surge of terrible images flowed through my brain. This was a deck still under-construction, as I had already explained to the petsitter. The dogs ignored it in favor of a veranda that was equipped with dog beds and couches.

Adrian would answer, “I’ll try, but if not, I will do it when we return.”

When we¬†return?¬†Didn’t Adrian know that this was it? There¬†was no “when we return”. There was¬†now and a blank wall. I would stare at him, silent, until he grew uncomfortable. I was not angry; I was thinking and concentrating on my thinking.

There was a voice inside that tried to soothe me, to remind me that this was just my catastrophic thinking, and then that white wall would loom and I began to leave little notes around the house for the petsitter. “Please do not run dryer unless you are home and awake” and “Please do not leave aquarium lights on when you leave.” I made Adrian leave notes for the remotes and the devices to which they were connected. I began adding to the instructions binder, including detailed characterizations of Reko’s, Ladu’s, and Lilac’s personalities. I described their appearances.

Change is so hard.

And then the fifth day arrived and with it a plane flight. The deluge became a torrent. I do not travel well on airplanes. I often have silent meltdowns, tears pouring down my face like raindrops on a windowpane. I wear noise-cancellation headphones and a hoodie and notice every single ping and pop that also picks my body up and throws me against the fuselage. Plus, the pet sitter. Plus, the flight back.

The night before we left, Adrian and I watched our favorite show together, sticking to our weekend routine. I was so stiff and everything stung my body, as though struck by sleet . Finally, I said, “I am a monster. I am impossible to live with. No matter how hard I try, I am not okay.”

Adrian said, “What can I do to make it easier for you?”

I cried, “Aside from staying home, nothing would make it easier.”

Adrian averted his eyes from me and said, “If you want to stay home …”

“It’s not about¬†wanting to stay home,” I wailed. “I was just answering your question. Nothing will make it easier. I just have to deal.” I sobbed and sobbed. “Please know that I love your family and I want to see them. I just don’t do well with change. Too many changes. Nothing will make it easier.”

But, I think I may have been wrong about that.

That downpour continued during our four day trip to visit his family. ¬†Once again, my life was moving from one activity to the next. Only now, instead of being at home with my beloved routine, I was at my mother-in-law’s, pacing in front of that white wall. I would wait for the breakfast email from the petsitter, hearing my phone ting its notification. Received! Time to wait for the lunch email. Got it! On to the wait for the dinner email. And so on, for four days.

There was also the plane flight back bookending the completion of our visit. It just sat there, waiting, like a giant taloned bird, unheeding of the water cascading over feathers, down hooked beak, puddling around raptorial feet.

And then the taxi home from the airport. Breathe.

And then the dogs rushing at us. Breathe.

And then walking through our rooms, savoring it all: the sunset, the assuaging nudging of paws on the backs of our knees, our stuff, my stuff, me. I even enjoyed the resetting routine, inviting Adrian in to my process for the first time in all of our years together.

There is that with my recent diagnosis — the unmasking for my husband, rediscovering each other, emotional intimacy.

Change is so hard.

How may I have been wrong about nothing making it easier?

  • What if I paid for the petsitter to visit while we are in town? To spend an hour with the dogs and really learn their routine?
  • What if next time we declined to sit for our friends’ dog when we, too, are going out-of-town?
  • Instead of internalizing it, what if I talked through my catastrophic thinking with Adrian?
  • What if I saw my therapist more frequently in December?
  • What if I asked my psychiatrist for anxiety medication?

Change is so hard and I am still recovering from Christmas 2017. I guess I thought that knowing that I am autistic would mean that I can automatically handle all of the things that had previously challenged me. But those challenges are still there and, like everything else, they require work.

I think change is always going to be hard for me, but that doesn’t mean I will not be able to find ways to manage it better. Just like inflatable armbands for beginner swimmers, I will find the water wings that will help me float the next time it floods. That way, I can drift on my back alongside that sleek, insurmountable wall, instead of trying to scale it. I will bob up and down and keep an eye out for rainbows, the ones with pots of chocolate at the end.

© 2018 Saraswati Chand

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My Mountain is Calling and I Must Go …

Inside each of us is a mountain, one so tall that the top cannot be seen.

The only way up is via a straight flight of stairs that are carved right into the rock. They are slick, they are narrow, and they are steep.

Every one hundred steps or so, there is a landing that leads to a path. This path encircles the mountain. Step onto it, breathe in the fresh air, sit on a boulder, enjoy the panorama — but remember, the only way to the next landing, the next path, is by climbing another set of stairs.

You may choose never to mount those steps; you may choose to stay on the ground. Or you may decide that the landing you are on, that looping pathway, is a good place for you to set up camp. You may stay there for days, weeks, months … even a lifetime.

After my mother died in 2008, I stopped climbing for a good 5 years. I hunkered down on the path that I was on, weary with grief, and looked into the deep valleys of memories that lay before me. In 2013, I stood up, flexed my muscles, and began a slow ascent of that stark staircase once again.

Then in 2017, I began running up the staircase. In 2017, the year I turned forty-two, I learned that I have autism.

The first hundred steps were surprisingly easy. They were when I began practicing mindfulness, intentionally focusing on the present moment. Since I was young, I have been aware of “living in present tense”.¬† Every single day, every¬†second¬†is a piece of clay that I sculpt with care and consciousness. I do not have a strong¬†episodic memory¬†and looking to the future is like looking straight at the sun, bright white and blinding. Because of this, I am able to cradle the individual moments of my life, nurturing them before they pass by, unnoticed. When I reached the landing, I didn’t even have to pause to catch my breath before bounding up the next set of steps.

I became alcohol-free. For almost twenty-five years, I drank alcohol on a regular, near daily basis. It had become part of my routine to measure out my wine and sip while cooking, sip while eating, sip for dessert. The process of measuring was part of my routine. The goblet I used was part of my routine. The struggle was not in giving up the alcohol; it was in giving up my routine. For weeks after I stopped drinking alcohol, I still measured juice or ice tea in that measuring cup, sipped from that goblet. Now, almost a year later, I have a new routine of morning-afternoon-evening teas, each with their assigned mugs, and a water-berry-seltzer blend in the evening, in a cut-crystal glass that is surprisingly similar to that once required goblet.

This time, when I reached the landing, I stopped, arms open wide, and gulped in deep breaths of clean air. I felt the warmth of the sun on my eyelids, a refreshing breeze nudge my cheeks. This is what it felt like when I was eight, I thought. Back when I played in the desert, read books, wrote stories, and swam all summer long.

I strolled that path, expecting that sobriety would resolve many of the issues I had experienced throughout my entire adult life, such as forgetting conversations from yesterday, bruising my hips after misjudging how to maneuver around obstacles, and burning my fingers and forearms while taking dishes out of the oven. As I followed the loop around the mountain, I was surprised that my expectations were not fulfilled.

In addition to that, I felt raw, as if my skin had been peeled off and all the underlying nerves exposed. Alcohol was a Band-Aid and now I was bleeding, my intense empathy exposed again, unable to distinguish others’ feelings from my own. I hid from the world. I became vegan. I worked on my book in earnest. I allowed myself to cry. I squeezed out sadness the way I would wring out a wet towel. I built a wall out of stones and clay. I hung those damp towels on the other side of the wall, aired them out, let them dry. There were puddles everywhere.

Eventually, I decided to go to the next path and began climbing the steps again. This time, I moved more slowly. The stone was damp and slippery. I needed to pause to rest my knees. When I was about halfway up, the educational director of our afterschool program introduced me to a volunteer who was going to assist with our most popular activity. After we parted ways with her, I said, “I can feel her positive energy just lift me up.”

My boss said, “I know! She is one of the volunteers we recruited from the autism organization. We are so lucky that she is part of our program. Although, I am not sure why she chose to work on that activity because she does experience sensory sensitivities. I’ll make sure to check in with her throughout the day.”

“Maybe she did it to challenge herself,” I suggested.

“Maybe,” my boss said, drawing the word out, though I suspected later that she didn’t really agree.

I thought about that conversation as I paused to rest, holding onto the rickety handrail. I wasn’t fond of that activity because it had a cacophony of loud noises from computers and movies, and because the lights were too low, blurring everything, reminding me of driving at twilight. It made me feel chaotic. I coaxed myself every day to lead that activity because my students LOVED it.

I wondered,¬†If I had a sensory sensitivity, would I challenge myself by working there or would I pick some other activity, one that wouldn’t leave me overstimulated and exhausted?¬†I still hadn’t recognized that I¬†was¬†left overstimulated and exhausted.¬†Probably not, I decided. If I had autism, I would advocate for myself.

But, my problem, as the adults of my childhood had taught me, was that I was simply too sensitive. There was nothing for which I could advocate; I just had to try harder. I must have had a vitamin deficiency if I was that tired at the end of the day. My social obligations were greater than my selfish desires for time alone. I needed to stop fidgeting and pay better attention to what people were telling me. I just had to climb faster and further. Nothing less was acceptable. No time for enjoying the view.

So, I pulled myself up from the bootstraps, just like I always did, and kept scaling those steps. Our program began to hold Autism Days, when we changed our lighting and sound effects and limited the number of families who participated. I found myself drawn to those shifts, which felt as freeing as unbuttoning a pair of tight pants.

I worked with people on the spectrum, people who came in on alternating days so they could have time to re-energize between shifts. Hey, I do that! I would think, though that recuperation period was just a bonus for me. I really did it so that I could work on my book on the off-days. Of course, I could have worked at the program four days in a row and spent four consecutive days writing, which would make sense in terms of focus, but no, these alternating days seem to be the most successful, for some reason. I took another step, my thigh muscles trembling, my breath shortening.

I taught children on the spectrum, children whose parents told me that their kids were task-oriented and needed time to finish a project before moving on to the next; that their kids had to eat their food in a certain order and needed space to lay it out in a certain pattern; kids who struggled with unexpected changes and could have meltdowns if we didn’t adhere to the schedule. I would smile at these parents and say, “I completely understand and don’t worry, we will make sure your kids have what they need.” I did understand, too. Quite literally. My knees buckled and I grew dizzy from the altitude. I leaned forward, resting my head on my forearm for a moment.

And then. And then. And then I learned that I have face-blindness. And then that program director walked into my classroom and said, “I have been calling you for the past fifteen minutes.” We both turned and looked at the phone, which was right next to me. The volume was turned up as loud as possible. The kids were working in groups, murmuring to one another, and I had classical music playing quietly in the background.

“I-I don’t know. I just didn’t hear it. Sometimes I have a hard time distinguishing sounds.”

The director, whose daughter had a fairly late autism diagnosis, stared at me a moment, and said, “Okay.”

And then I reached the landing. I was struck with vertigo and sat down, leaning back against the sturdy mountain.

I was panicking. I Googled “autism signs”. And then. And then. And then I¬†knew. It felt like sliding into a refreshing lake after hiking up a steep trail in the peak of summer.

I stayed on that path for a long time, turning over every rock, peeking under every leaf, examining every aspect of my life. Autism.

I began climbing those steps again, slowly at first but gaining speed. There was mica embedded into the stone and the sunlight would flash on it, reflecting back a memory. The way I have spatial locations for numbers and time, like stars in the galaxy.

My hand ran along the bamboo railing¬†and I saw another flash.¬†Why the overlap of Adrian’s voice, Reko’s bark, and the jazz station sounds like a fan blowing on its highest setting.

I lifted my knees high as the steps grew steeper. Flash. My refusal to wear bras. Flash. The moment I come home, I put on my cosy clothes of the softest cotton. Tagless, of course. 

I leaned forward and began to pound up the steps, breathing hard. Flash.¬†Why I could never improvise in my jazz piano class. When it was my turn, all I saw was a blank screen that extended forever in every direction. Flash.¬†The time I hooked up with a college friend’s boyfriend because she said she was tired of him talking about me, so could I please just fool around with him to shut him up? All of our friends shunned me afterward, saying I wasn’t actually supposed to do it. But, then why did she ask me to in the first place?¬†Flash. My preference for attending Bug Club meetings (I was the founder and only member) over playing with classmates after school.¬†

Pumping my arms, my feet barely touched the steps. I felt as though I was floating up the staircase as I inhaled those memories and let them fill me up.¬†Flash.¬†How even now, thirty-five years after I coined the phrase in regard to my first dog, I will spontaneously shout, “Slobberdy Goop Handsome!” Flash.¬†My love for¬†thalis.¬†Flash.¬†The quarter-century of eating the same Subway sandwich, put together in a very specific order.¬†Flash. The constant rotation of “Frasier” … with closed captioning.¬†Flash.¬†Why I do this to my french fries:

How I Eat French Fries

I was almost there. The landing was in sight. I bounced up and up, springy and free.¬†Flash.¬†Why “Eine Klein Nachtmusik” always elicited images of playing hopscotch, galloping horses, exploding fireworks, and hiking boots skidding on dirt. Flash.¬†Listening exclusively to Radiohead’s “The Bends” from 1999-2004.¬†Flash.¬†Reading¬†Bridge to Terabithia nine times in one summer.

I leapt onto the landing and raised my fists to the sky, breathless, flushed, and giddy.¬†“Why I am not able to ride a bike!” I shouted, shrugging off that torn jacket of shame.

I raced along the path as if sprinting on a track, trying to increase my speed and outrun the years of beration and loathing: the reproached child, the wayward student, the draining partner. There was never anything wrong with me after all.

It was like taking off a pair of someone else’s spectacles and seeing through my own eyes for the first time. And, oh, was the view breathtaking. Everything was suddenly so clear.

And so I began climbing again. I had the energy, I had the discipline, and, most of all, I had the drive.¬†Because see, this wasn’t just about me.¬†What about my marriage?¬†about¬†all of our misunderstandings?¬†I wondered. I suddenly heard footfalls and heavy panting behind me and turned. There was Adrian, who had crossed a bridge from his mountain to mine and was climbing with me.

We reached the next landing together and I held my hand out to Adrian, hoisting him up. As we caught our breath, I asked him if he remembered when, a few years ago, I had read that doing more than two loads of laundry a day could cause the washer to breakdown. I was distraught because I thought that meant if I did a third load in twenty-four hours, I would damage the washer.

Adrian had then explained to me that there wasn’t actually a limit on the number of loads, just that the guaranteed lifetime of the washer was dependent on average use. More than a couple of loads a day (more than average, in other words) would lead to more wear and tear and to a shorter lifespan, not to the washer immediately breaking down.

I had retorted, “No, that’s not what the article said. How am I supposed to wash all of our sheets in one or two loads? This is impossible!” I clenched my fists, my face tight. I liked my laundry routine of doing as many loads as I wanted before five o’clock, no exceptions or extensions.¬†How had I not already damaged the washer?¬†I remembered wondering.

We had argued back and forth about that and I had cried from my frustration, from hearing the frustration and impatience flick from his voice and sting me. Why am I always wrong when I am just relaying what I read? It was written by an expert, so how can it be incorrect?

We stood on that mountain landing, gulping in air, when Adrian told me he did recall that conversation. At first we were uncomfortable, standing on the edge, reliving the tension, the stiffness. But then he gave me his sweet, one-cornered smile and we began stretching our sore muscles. I announced in a loud voice, as I reached for my toes, “We just didn’t understand each other. You didn’t realize how literal I am and thought I was being intentionally obtuse. I thought you were being mean. Now, though, we work together.” We grinned at each other before Adrian crossed a bridge back to his mountain — we planned to meet there later for a picnic — and I continued my ascent.

I feel a cool wind lift my hair and look up. The top of that mountain is still far far away. I wonder if any people have ever reached the peaks of their mountains.

I stop mid-flight and turn around on the staircase to appreciate the vista before me, the valleys, the hills, the trails, the scorched land, and the plantlings that have taken root, unfurling in the sun. It is heady stuff, balancing on a precarious stone step, looking how far I have climbed.



© 2018 Saraswati Chand

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Deficient vs Different

Within the first few moments of my formal evaluation, I felt as though I were on trial and Dr. Devell was opposing counsel, deflecting my evidence with a twist of my words. He was also judge and jury. My job was to act as my own attorney and provide documents, examples, and histories to defend myself. I had to bring in witnesses, in this case, my husband, Adrian, to support my case. Opposing counsel ridiculed me (“I don’t believe you, yet …”); provided conflicting alternate theories (“Your instructors’ reports, your absences and withdrawals, and your grades suggest significant executive function deficits …” followed by “Your advanced degree indicates that you are fine …”);¬† had evidence suppressed because I gestured with my hands, was able to maintain a long-term friendship with Loverne, and had previous (mis?)diagnoses (“If you have OCD, then you won’t have autism, because the two are not co-morbid …”).

It was demoralizing. It was dangerous.

At one point, when I was crouched on the floor of my living room, picking up pieces of a glass I had thrown while in the midst of a meltdown, I looked up at Adrian, my face swollen from crying and said, “Why won’t he listen to me? Why won’t he read my words and believe them? Why does he want me to have social anxiety, bipolar disorder, obsessive-compulsive disorder, and attention deficit disorder¬†instead of autism?”

Dr. Devell rescheduled on me for the third consecutive time because he forgot about our meeting and had double-booked. This would be the second time he rescheduled that particular appointment. At that point we had only met twice. Three reschedules over the course of two visits. Once, it took him a week to respond to my response to his reschedule, never acknowledging that he had missed the new meeting time I had suggested. He asked me for the seventh time to interview over the phone even though I had stated nine times that I have a difficult time with that mode of communication.

I ended the evaluation.

By that time, I was seeing my regular therapist on a weekly emergency basis as well as calling her every Wednesday to check in.  I met Dr. Devell to pick up some final paperwork and he and his supervisor sprung an outtake interview on me, like a surprise party in a nightmare. All surprise parties are the stuff of nightmares but this was the worst, because it came true.

I sat for forty-five minutes, staring at their mouths while they told me that it was all in my head, that I am just sensitive, and that I pathologize myself. It turns out they didn’t want me to have anything at all, except for hypochondria and a need for attention. The only thing wrong with me was me.

  • My previous professional diagnoses of bipolar and obsessive-compulsive disorders and the underlying symptoms were dismissed as nonexistent.
  • My history of executive dysfunction was not discussed.
  • My inability to understand subtext and the havoc this has wreaked were ignored.
  • My need for sameness and repetition were recognized and followed by a shrug of Dr. Devell’s shoulders, an “I don’t know …”, a downturn of his mouth.
  • My prosopagnosia, including the time I was unable to recognize my family in a photograph, was declared a product of anxiety, though not a pathological anxiety. No, this was an anxiety that I manufactured because of my delicate nature.

And so on and so on and so on.

Dr. Devell said that what I described supported a diagnosis of autism, but I was able to work and was married, so did not exhibit impairment. Then he defined impairment to me.

Then he defined impairment to me. 

He finally said, “You say you don’t feel _________________ but I think you feel _______________.” He smiled toothily at me to demonstrate his rapport with his patients. It was a brilliant show for his supervisor. At the end, Dr. Devell asked me if I had any questions. I sat, stupefied at his summary, and said “No”, barely able to open my mouth enough to allow the word to escape. It was a shield. Your weapons strike me but do not penetrate.¬†

“I knew you were going to say that!” he exclaimed in a sunny voice. “I expect that you will be sending me a loooooong email later,” he added grinning and watching his supervisor from the corner of his eyes, as if he and I shared some private joke. In reality, that comment was a reference to the sixty plus pages I had written and sent to him when I realized he wasn’t understanding my oral communication, which is sparse and unembellished as a winter tree, especially under duress. Sometimes even the “no” is impossible, my muscles painful and unable to move, my brain full of the black and white static of an exhausted television set. He had told me to write as much as I wanted yet never stopped grumbling about the length. Even when I cancelled the evaluation he said, “The other two experts on the panel have certainly not been able to get through your documents.”

The first problem I had with that evaluation was that my fear of being misunderstood, unheard, and negated yet again came to fruition. I found this blog post, which, while distressing and horrific, is also uniting, solacing, and I am utterly grateful for it. As one commenter wrote, “…¬†I felt extremely vulnerable. When I was describing why I thought I may have Aspergers¬†[sic] I¬†completely bared my soul, and I was still not believed. This was SOOOO painful and traumatic for me. It should not be this way.”

The second problem I had with that evaluation was the emphasis on impairment and deficiency, as if people with autism are inherently damaged in some way. It seems that for me to fit his definition of autism, I must be broken not whole. I must be wrong not right. I must feel bad not good.

Why can’t I be autistic and happy? It is as though the standard for permitted bliss is a creek, a narrow trickle of water, and I am sitting on the banks. What if that creek widened and became a flowing river? What if there was room for all of us to swim? Some of us could be NT and some of us could be ND and we could dive or float or warm ourselves in the sun before jumping back into the cool, clean water … whatever felt good to each individual.

I know that I am autistic, not because I am a failure (in fact, I am not a failure, despite society’s definition!) but because I experience, interpret, and perceive the world in ways that are different than how most people seem to do. This can certainly be challenging at times. I am like my beloved Windows phone in an iPhone world, incompatible and unsophisticated. But life can also be glorious and pleasurable. Adrian has even told me that I have superpowers:

  • While my sensory processing sensitivities require close captioning to be on as I watch tv or the radio to be off when someone is talking to me, they also allow me to appreciate the tactile pleasure of my dog’s coat growing in cowlicks and the way that water reflects on trees.
  • I may not spend time socializing but my special interests establish a work ethic and focus that are unstoppable.
  • My rigidity creates a routine that is comforting to my family because my husband knows he will have clean pajamas after a long day at work and Reko is confident he will get his walk. Ladu knows that when I breathe a certain way, it is time for us to sit outside for lunch.
  • My stimming can cause my body to move in unexpected ways as the thrills of certain patterns and repetitions ripple through me.
  • Synesthesia allows me to see¬†music.
  • Instead of remembering faces, I recognize people by a certain wry of squint of his eyes or the soft melody of her voice. I notice the details.

For over forty years I have struggled with not understanding what people expect, not knowing to turn in homework without being asked and not knowing to do the opposite when a girlfriend says, “It’s fine with me if you go out with him”; with relationships squeezing every drop of energy from me the way the constant whys of a three-year-old do to tired parents; with completing everyday tasks, such as preparing two dishes¬†at the same time or managing my finances, which are as insurmountable as taking one giant step over the Rocky Mountains.

My whole life I have felt as though I was a black hole, pulling everything into the dread of my nothingness. Or a great monster, destroying the world around me with the bite of my sudden absence or a swipe of my clawed literalism. I cut myself. I gave myself second degree burns. I attempted suicide on three occasions, serious, scary attempts.

The realization that I have autism has led me — through research, support groups, and the compassion of my therapist, Adrian, and Loverne — to cope with challenges in healthier ways. I no longer shame myself with questions that begin with “Why can’t I just …”. I no longer allow others to shame me. Dr. Devell, an ABA practitioner, told me that I needed to take classes to learn “throwaway lines so [I] can pass in social situations.” Why? I don’t need to do anything except care for my comfort and not cause harm as I maneuver through this world.

Now, I am at peace. Knowledge is power, after all. I finally know that I am neither black hole nor monster. I am just different … not deficient. Why should I focus on impairment? I have meltdowns and shutdowns. I have experienced two autism regressions¬†just in the past year. I also am tough.¬†I give myself permission to appreciate the blessings.

I ask you, Dr. Devell, why should my happiness be a factor against this diagnosis?

Since those dark days of evaluation — and that is what my memory of them is: sunless and miring, as if I were suspended in a tar pit — I have been healing. At first, I shuttered my home and curled up in the soothing shadows. Now, the windows are open, fresh air breathing resilience into my spirit.

I am me.

I need a chair to reach all but the lowest shelves in my kitchen. I wear noise-cancellation headphones in crowded spaces. I am right-handed. I rub smooth stones that are hidden in my pocket when I engage in small talk. I always stand up straight.

I never realized how tall I am. I am so very very tall. I might just step over a mountain one day.



© 2017 Saraswati Chand






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Hope and Resilience, Two Vignettes


Every Sunday, Adrian goes to pick up doughnuts — two apiece — for us to eat on our veranda, Reko and Ladu perched next to us like plump little birds, their keen eyes watching for falling crumbs to peck*. This week, I decided that instead of a plain glazed cake doughnut, I wanted a chocolate glazed yeast one. I still wanted my usual Homer doughnut¬†and didn’t care if it came in cake or yeast form.

Are you with me still?

In my attempt at being as clear as possible, I utterly confused my husband to the degree that he had no idea what to get me.  I tried again, drying dishes as he made coffee.

“This week, I want the Homer, it doesn’t matter if it is cake or yeast, and instead of a cake, I would like a yeast.”

Nope, not any better.

In addition to generally being very particular about my food, I am vegan, so there is always an element of anxiety for both of us when Adrian picks up our takeaway orders. Of course, the easy solution is that I pick up the food, but the process is much smoother and quicker when he does it. My sensory sensitivity and topographical disorientation and routine require quite a bit of planning for me to comfortably leave the house.

Is it any wonder that I cook almost all of our meals?

After about two more circular discussions, mostly involving whether I want cake or yeast donuts,¬†forget the whole Homer-plain-chocolate puzzle, I finally said, “Whatever is easiest for you is fine with me.”

I¬†hate when I do that. I literally threw the towel I was holding down and just gave up. Talking can be¬†so hard. There is no such thing as a simple instruction. My tongue feels huge and cumbersome in my mouth and I just don’t want to speak anymore.

In a quiet voice, Adrian said, “Okay.” He remained sitting, his hands clasped.

I whirled around, deciding to take the risk. This is one of the greatest benefits of discovering that I have autism: my husband and I understand each other better … even if we don’t always understand what the other is saying. Because of that, I am willing to take big, scary emotional risks, like trying again to speak.

“Adrian, what am I saying that is so confusing? I am trying my best to be clear.”

“I just can’t tell what you want. You are saying you don’t care if it is yeast or cake and then you ask for yeast because you don’t want cake.”

I wanted to laugh at how absurd this scenario was. We were both so serious and we were talking about¬†donuts. But we weren’t, really, talking about donuts. We were talking about talking. We were talking about communicating.

I started to cry, covering my face with my apron. “I am not mad, though it seems like I am. I am just frustrated. This may not happen to you often, but it happens to me all the time. I can’t even put in a food order without bewilderment and misunderstanding. Every conversation is confusing. It makes me want to not talk to anyone.”

Adrian said, “Oh, honey, I am sorry that this is so hard.”

“I’m sorry for making this so complicated.”

I tried again and fifteen minutes later, we were eating our donuts. Adrian read the news and sipped black coffee while I savored my chewy, yeasty, and airy Homer and chocolate glazed donuts with a big mug of green tea.

* Reko and Ladu always watch for spills, staring intently at the ground, our hands, and our mouths. I assure you, however, that they do not get table scraps and that includes donut crumbs!


The other day, I spent almost two hours searching for a song. This song, which was quite popular a couple of years ago, had several variations of a melody that gave me the greatest pleasure sensations. Listening to it was like eating a piece of dark chocolate sprinkled with smoked sea salt, surprising and decadent.

I couldn’t remember the name, any of the lyrics (or if it even¬†had lyrics), the band, the year it was released … nothing … except that it was a dance song with a horn instrument. I searched everywhere, mining reddit posts that asked if “anyone knows that song that has a dance beat?” or “can you tell me which song has a trumpet playing ‘dum dum duh duh’ in it?” I checked Billboard top 100 for the past five years.

I should have been working.

I suddenly recalled that the song was featured in a commercial with yellow animated creatures.¬†A mobile phone commercial, I thought.¬†Yellow animated creatures? Sometime in the last two or three years? “Minions!” I exclaimed, and began Googling.

Why can’t I just start working?¬†I wondered, as I typed.¬†Come on, I urged.¬†You can do it. Switch tasks. Here you go …

The Minions have been in a lot of commercials. I watched a YouTube video that was almost ten minutes long and played every commercial they had been in, domestic and international. No song.

Hmmmmm, I thought.¬†Maybe they aren’t Minions.

I had my own variations of a search that included “yellow characters”, “dance song”, “commercial” “phone” “horns” … and voil√†!

I found it! I played it eleven times, swinging my hips, tapping my foot, snapping my fingers, wagging my head. I sang along with the variations, playing the drums on my dogs, kissing them to the beat. I twirled around and clapped my hands. I squinted my eyes so my room became a swirl of colors.

And then, I played it eleven more times.

I am playing it as I type this and see colors exploding in my head, soaring up and sliding down. My muscles are tightening and releasing, lips pursing and relaxing. I feel as though I am floating and roller skating and swimming and climbing a tree and lying perfectly still.

I am free, the sunlight on my face, wind lifting me up up up.

And when I sit down to work, I can hear the music playing in my head like a secret security blanket.

© 2017 Saraswati Chand

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