Storytelling

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 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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An Autistic Woman Goes to the Doctor

I went to see a new doctor for the first time since I realized I am autistic.

I felt different this time. Less helpless, maybe. Less like a foreigner trying to have a sophisticated, urgent, intimate conversation in a language I knew only from studying textbooks and television programs. I still don’t speak¬†that language — my strength is in written, not oral, communications. I have, however, found another, a kind of pidgin of the two.

The characteristics of of pidgin development, per Wikipedia, are as follows:

  • regular contact between the distinct language communities
  • need for communication
  • an absence of an overlapping language

Going to seek medical help certainly qualifies for the development of an oral-written pidgin. For me, pretty much any interaction with the outside world does. Usually, I force myself to struggle through talking, even though words hide from me like children playing games. Even though listening without closed captioning and a pause button give me a maybe 30% comprehension rate.

This time, however, bolstered by self-understanding —¬†Hey! Why I am forcing myself to have oral communication when there is a simpler, more accurate method for me to convey my symptoms and needs?¬†— I walked into New Doctor’s office fortified by my most effective tool: words on paper.

At the top of the page, I had written:

SUSPECTED AUTISM

  • can struggle with oral communication
  • best at written communication
  • interoception sensitivity ‚Äď I have difficulty recognizing pain until it is unmanageable (until then, I describe it as ‚Äúdiscomfort‚ÄĚ)
  • can be very literal and have flat affect ‚Äď please know that when I say that I have pain, what I mean is extreme pain

And beneath that, I followed with detailed medical history, finishing with the specific symptoms that led me to seek medical help. I neatly stacked the information, the way that I best process and communicate it, like nesting tables that can be pulled out when needed and put aside when not.

At first, I felt uncertain. I only have a “soft” diagnosis of autism, though not for lack of trying, continued trying. But I had to do something, I had to advocate for myself, especially if I couldn’t find professionals who would, despite the fact that I have reached out to my local autistic community multiple times, still waiting to hear back after a first date that ended months ago.

I also felt guarded. I have a disturbing history with the medical community, relating to my reproductive and mental health. From the early 1990s until 2013, I went from ob/gyn to ob/gyn, seeking relief from the intense, debilitating pain that I experienced during my menses. Every single doctor looked at my medical record — which included a (mis)diagnosis of bipolar disorder —¬† and listened to my stammered and stuttered sentences. Talking is always hard, especially when it is about something important.

They all saw one thing, flashing in neon lights:¬†BIPOLAR DISORDER. I was told that I was attention-seeking, dramatic, just needing exercise. I was told that people with bipolar disorder lie. I was told that I was manic or that I was depressed. I was told the pain was normal. Or in my head. Or no worse than anyone else’s. This last one always confuses me. What does it matter how it affects anyone else? If it is hard for me and I am seeking help … help me!

My ability to orally communicate with these doctors grew smaller and smaller, until it was small enough to fit in a capsule, like a reverse Magic Grow toy.

Finally, my supervisor at work recommended her ob/gyn, who was also a surgeon. I brought Adrian, hoping that if the doctor didn’t believe me, he would at least believe my husband. This went against everything I believe about people having agency over their own bodies, but I was desperate. Nobody was hearing me. Nobody was listening. Maybe they would listen to a “him”, especially a “white him”. I didn’t care anymore.¬†By this point, I couldn’t walk when I had my period, the pain was so excruciating. I described it as “stabbing with a fiery blade”.

Ob/Gyn Surgeon was amazing. He was polite to Adrian, but never asked him a question about anything, let alone to verify my story. He listened to me. Because of Ob/Gyn Surgeon, I was able to finally have the hysterectomy I sought. Because of Ob/Gyn Surgeon, I learned that my body was going into labor every time I had my period, due to large fibroids in my uterus, that my pain was very real. Because of Ob/Gyn Surgeon, I felt empowered to see New Doctor last week with that piece of paper in hand.

I was nervous seeing New Doctor. I suspected I had pudendal neuralgia and read myriad accounts that stated people have spent years traveling around the country, trying to find a doctor who believed them. I cried to Adrian, “I don’t want to have to go through what I already went through with my hysterectomy. It is exhausting, trying to communicate, trying to be believed by one damn person. This is just like what happens when women seek autism diagnoses.”

I thought about all the ways my life has changed since I realized I am autistic. I found myself. I honor my needs. I no longer feel shame. I find different avenues or create my own. I use flash cards and read blogs and do research and join support groups. Every aspect of the way I live my life has been transformed. It can be hard. It can be painful. But it is real.

I can do this with New Doctor, I thought.¬†I can establish a baseline with her, stating ‘This is who I am and how I work’. I will not be the woman who found out she is autistic; I will be an autistic woman.¬†

And that is what I did. New Doctor read my notes and asked me what my pain level was. I shifted in my seat, feeling rods pushing through my vagina and rectum, piercing my abdomen. Fire dripped down the front of my thighs. My hips burned as the smoldering ratchet bar inside my belly spread them apart.

“There is pain,” I answered her, finally standing up and kneading my legs and buttocks.

She touched her finger to the the words I wrote: “… please know that when I say that I have pain, what I mean is extreme pain.”

I added, “I would like to try to manage this with lifestyle changes and physical therapy first, before going a medicinal route.”

I had rehearsed this sentence at least thirty times the evening and morning before my appointment. I used beloved television characters as role models and practiced using a tone and inflection that didn’t seem argumentative (I have often been described as such when I am simply trying to self-advocate). I looked in the mirror and worked on facial expressions, wanting to convey both my confidence and my humility. I did not want to seem arrogant or dismissive, which I have also been labeled, again, when trying to self-advocate.

New Doctor smiled at me. Adrian later explained that so many people go to the doctor seeking pain medication that I may have surprised her. But, if I could prevent this from flaring or escalating, why would I hide the pain behind an iron curtain of pills and injections? If I couldn’t, well, I would be the first to hang the new drapes.

New Doctor then looked through my typed list of symptoms before saying, “There is a nerve, the pudendal nerve …”

I was nodding vigorously. “Yes, pudendal neuralgia. That is what I think is going on here. If you look at my notes, you will see I have pain from sitting.”

New Doctor pulled up a website, one I myself had explored during my investigations. She looked back and forth from my supplement to the computer screen and finally back at me. “There are special cushions that may help.”

“I ordered a breast-feeding pillow that was recommended by someone in a PN support group! It has little sea creatures on it!” I exclaimed, excited that New Doctor believed me.¬†She believed me.¬† Also, I love sea creatures. They have always been one of my special interests.

“Perfect!” she said. “Now, I am going to get you referrals for an ultrasound and MRI, just to see what is going on internally. I will also set you up with a physical therapist who specializes in pelvic pain. Of course, we do have a pain specialist on staff who can provide you with medicinal care, if you should go that route.”

The entire appointment took less than forty-five minutes. I walked (shuffled, limped, whatever) out, referrals in hand, just as I had walked in clutching my notes. I felt like I was dancing.

I am an autistic woman. And I expect people to presume competence, even if the tools I use are different. I don’t need someone to speak for me anymore. I just need to be heard. I will bring my pen and paper, you will bring your open mind, and we will speak in a beautiful, flowing pidgin.

 

 

© 2018 Saraswati Chand

 

*I give great credit to New Doctor and her strong listening skills, the most important skills any medical professional needs. 

*Please stay tuned for posts about my experiences with the referral visits. 

 

 

 

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Hearing the Unspoken

I hear Adrian muttering and sighing in the kitchen and walk out of my room. My head is buzzing, as if the wasp nest that we found in our rolled-up porch curtain had relocated to my brain.

“I can hear you muttering and sighing,” I say. “Can you please just¬†tell me what I did wrong?”

Adrian has been working from home for the past two weeks and we have had some iteration of that interaction at least once a day. I say things like:

“Please know that I am not being passive-aggressive or sarcastic. I literally cannot understand subtext.”

“I need you to explain to me verbally and in detail what I am doing that is annoying you.”

And Adrian will respond with, “I just am not feeling well, that’s all.”

Well, that part is true. He isn’t feeling well, which is why he is working from home. But, I know there is more. There always is, with almost everyone I have met.

This time, I appeal to Adrian again while he makes his breakfast. “Please. I know this is hard for you, too. You tend to be a non-verbal communicator. You use face and body language. I don’t understand that language. Please just tell me.”

Maybe it is because I acknowledge his experience that Adrian trusts me enough to say, “When I asked if you could move away from the toaster oven, you didn’t have to leave the room.”

“But … I said I would come back when you were done cooking.”

“But … you didn’t have to leave.”

“I know, but I wanted to.”

This is maddening. It is as though we are on opposite side of a river. We have each found enough rocks to place in the water to reach almost half-way across, but there is still a huge gap. White water rushes through that gap, carrying with it leaves and twigs and uprooted plants. I stand on my rock and he stands at his, closer, but still too far to jump.

“Why does it bother you that I left?” I ask, trying a different approach. A large branch careens over to us, bobbing and unpredictable, and I grab it, almost falling in. I lift up the branch and hold it out. It is long enough to bridge the gap.

Adrian grabs hold of the other end of the branch and says, “Because you didn’t have to leave. I just needed to grab my toast and get back to the stove before my eggs burned. You could have just taken one step to your right instead of leaving.”

We both sway a little as I lower my end of the heavy branch. “But, it doesn’t affect you one way or the other if I decide to leave.”

“I know, but I simply asked you to move over and you just left.”

A-ha. Now we are getting somewhere. I hoist the branch over my shoulder. Adrian is still holding his end in the strong clamp of his hand.

I say, “You thought I was mad and that is why I left, is that right?”

Adrian nods.

“I wasn’t mad. I would tell you if I was. But, I saw that you had a lot of things going on and my stuff could wait.”

“I just had to get my toast and then get back to the stove,” Adrian says. He sounds wounded and I realize that he rarely asks me to accommodate him. This one time he did and I left the room rather than move over.

It’s confusing. People often say they are not annoyed or angry when, in reality, they are. On the other hand, they often think that I¬†am¬†angry when, in fact, I feel neutral.

In this case, I¬†knew¬†that Adrian was not happy with me because I could hear him muttering and sighing. Going back to when I was very little, those sounds have been precursors to inexplicable tension and, sometimes, the dissolution of relationships. From my junior high school best friend to my college roommate, from my first crush to my last supervisor, I recognize those sighs and mutters as Something Foreboding, just as I recognize that the whirlpool forming in the flow of water between us is Something Foreboding. I just don’t know what that Something Foreboding is exactly.

Adrian, for his part, thought that I was angry when I walked out of the kitchen, saying, “I’ll just come back when you’re finished.” In reality, I was just doing what made the most sense. I was not harboring any negative feelings.

I shift the branch to my other shoulder. The river seems to be rising, getting louder, the whirlpool widening, but I still speak in a quiet voice. “Adrian, I have told you before that I don’t like fast movements. You move so fast while you are cooking. You have the eggs on the stove and then you are running to the toaster and then rushing back to the stove … it is overwhelming for me to be around that. It freaks me out.”

I move slowly, I think in large part due to my postural motor skills, which fall under sensory processing sensitivities. If I move fast, I will drop or break whatever is in my hands or along my pathway. I fall down and bump into obstacles. It makes me very nervous to be around people who move quickly, because I won’t be able to get out of the way quickly enough.

I continue, “My movements are sequential and deliberate. When you asked me to step aside, I knew I wouldn’t be able to do so fast enough for you to accomplish your tasks. It was better for me to leave. I promise that is the extent of it.”

Adrian picks up his plate. “Thank you for sharing that with me. I didn’t know that.”

But, see, that is the other thing. I have said before that my pace is slower than other people’s. I say this when we are visiting the city and I am carefully staring at the broken sidewalk while eyeing the people rushing around me just as that river does. I say this when we go out to eat and when we take Reko for his walk.

I often say how I feel, but people, even my loved ones, don’t seem to realize it. I think part of that is because I struggle with expressing myself orally. When I try, it is like watching a movie through a thin, white curtain. Beyond that gauzy curtain, the images are unclear. I will say, “I move slowly, especially when I am not alone” and mean that when I am around other people, I now have to be cautious of their unpredictable motions as well as my own motor skills. Perhaps I don’t express that explicitly enough.

Now imagine that, in addition to a curtain between you and the movie screen, the projector light dims. The blurry images fade into shadows. Nuances are concealed — facial expressions, gestures, small movements. That dim light is my affect. When I say, “Fast activities overwhelm me”, I mean just that. I am overwhelmed, mere moments away from a meltdown. But, because I don’t say it with drama or flair, people, even my loved ones, don’t understand the extent of how I am feeling it. The emotion is there, inside me, but my affect is monotonous or, as I consider it, matter-of-fact. I often think,¬†My words should be sufficient.¬†I don’t speak with theatrics but that doesn’t mean my words aren’t true.

I say to Adrian, “It must be difficult for you to be around me all day. This is my natural state: quiet, conserving energy, flat. There is a lot going on underneath, but this is how I present myself when I am alone.”

We look at each other. I can feel my face. It is arranged in a blank expression. I suppose some people would describe it as aloof or detached. It’s just my face. It makes people think I am angry when, in all likelihood, I am not even thinking about them. I am probably thinking about my routine, my writing, or my cooking. Adrian’s gaze is probing, reserved.

“Adrian,” I say, “In the evenings when we see each other after you come home, I know I am engaged. I laugh and can be silly,” he nods as I continue, “but that is not how I am naturally. I mean, all those reactions are genuine, but I am only that way in small bursts. The rest of the time I am like this.”

The whirlpool is mute, pulling into its vortex pebbles, silt, woody debris, the movie projector, a white curtain, my periwinkle sunshades that are cracked in one corner. I used to collect funky sunglasses when Adrian and I first met and watch the first of my collection twirl around and around before disappearing in that watery funnel. I shut up now, too,  because I am aware that my oral communication skills will not be able to explain what I mean. I sound as though I am being fake with my husband, when in fact, I am more me with him than I have ever been with anyone else.

But the me me, the one who I am by myself, is, for the most part, silent. Verbally silent. There are lots and lots of thoughts. They fly through my brain like a flock of sandpipers, sweeping from one end of my mind to the other, through a spray of white water, swirling together in breathtaking patterns.

Adrian says, “It must be difficult for you to be around me all day.”

“As long as I can follow my routine and work on my writing, it’s fine,” I say. I think,¬†You should probably smile at him now. But I don’t. I am still holding that branch and it is getting damn heavy.

Adrian puts his end down on his rock and looks at me, flexing his hands. He nods, encouraging me. There is a notch in my rock, possibly eroded by the river itself, the perfect size to catch hold of my end of the branch. I nestle it in there and stand up.

The branch stays in place, even with the powerful currents splashing over it. We each take a step, reaching out for balance.

 

 

© 2018 Saraswati Chand

 

 

 

 

 

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The Mechanics of Giving Care

Ladu pressed against me, his small body shaking. I murmured, “It’s okay, Kitten. I know. I know,” as we both took in deep, shuddering breaths. Flecks of chicken floated to the ground, caught in my curls, the slight hairs on his belly, clinging to the tip of one of his enormous, triangular ears, ground into my cosy pants.

“You did it!” I whisper-exclaimed, rubbing his back and chest, kissing his velvety forehead, the furrows rippling against my lips. Our racing hearts slowed in tandem as the electricity in the room fizzled away, like the fading afterimage of a lightening bolt. After a few more moments of nuzzling, Ladu’s trembling stopped.¬†“I love you, sweetie,” I said. “It’s only because I love you.”

A few days earlier, Ladu had been diagnosed with an ulcer. Like many cats, he had shown no signs of pain until he suddenly began vomiting and defecating blood, the latter as dark and tarry as freshly laid asphalt. We had begun a regimen of bland food and medicine, but on this morning, Ladu had stopped taking his pills.

I had held out the little canned food meatball with an antibiotic center hidden inside, and he had delicately sniffed it, nostrils flaring slightly, before turning away. When I put it on the ground before him, he nibbled the outside and left behind the tablet. Ultimately, I had to medicate Ladu by holding him tight, prying his mouth open, slipping the pill inside, holding his muzzle closed, and stroking his throat, begging him to swallow.  With the first few attempts, I found the pill in the corner of his mouth, dissolving like a bitter sugar cube. He eventually swallowed the sodden lump with an audible click, as if a door had been closed. 

When Adrian returned from his business trip two days later, I was exhausted.

At this point, the process of medicating Ladu twice a day had become an enormous source of stress. It was like the sun, boiling and roiling and rotating. Every twelve hours, we would cringe, Ladu doing his best to resist the unsavory medications and me doing my best to coax him. Most often, this medicinal dawning and eventide was accompanied by a ceremony of my tears and streamers of his saliva.

“It’s getting harder and harder to get him to take his medicine,” I confided to Adrian on the night of his return. “I hate having to pill him. He is losing trust in me when I offer him food, too.”

It was true. At dinnertime, he would scamper into the kitchen with Reko, indicating that he was hungry, but when I put a bowl of food in front of him, he would look at it, eyes bright with anxiety, and then at me. Finally, I would offer some to Reko, who would gamely eat it. Only then would Ladu commence dining.

“The Royal Food Taster,” I would say laughingly, as Reko licked his lips, but inside, my own stomach was boiling and roiling.

The next night, Adrian came home with doctor-approved turkey slices. “These will get him to eat,” he said optimistically.

With great determination, I rolled a piece of turkey around Ladu’s antibiotic. I could feel the drumroll of my blood pulsing in my neck. I held out a piece to Reko, who gobbled it up, his tail sliding back and forth over the ground.¬† I held out the turkey roll to Ladu. He sniffed it, licked it with the tip of his tongue … and turned away.

My disappointment and confusion were like an anvil falling on me. I felt crushed. “I guess I am going to have to pill him again,” I said, my voice morose.

“Would it be okay if I tried?” Adrian ventured.

I weighed the pros and cons. Adrian was the one the boys went to for treats. If anyone could get Ladu to take the turkey roll, it would be Adrian. Plus, I could still pill him at this point if needed, even though it was awful for both of us. On the other hand, if Ladu started to distrust Adrian, we would be at an impasse. 

I looked at Ladu. He was ravenous and thin, watching us with those eyes, shiny as polished mahogany, the scent of the turkey twitching his nose.

I stepped back and Adrian held out a piece of turkey saying, as he did every night at Treat Time, “Reko.” Reko sat and gently took his piece. “Ladu.” Adrian turned to Ladu, who gobbled down his piece with the antibiotic.

“Wait!” I said. “He is also supposed to take an antacid.” I handed Adrian a chip of medicine and he went through the routine again, and again Ladu took the roll unhesitatingly.

I slumped against the counter, relieved and uneasy. “Thank you, Adrian. You have no idea what this means. Thank you.” Then,“Why did he take it from you and not from me?”

Everything I had thought was wrong. I had thought Ladu could smell the pill and that was why he wasn’t taking it. Or maybe he had been too nauseated. After all, I had offered the turkey to Reko first, which had before always prompted Ladu to eat. Since it hadn’t this time, it was reasonable to think he didn’t have an appetite.

“Well,” Adrian responded. “I wrapped it up in a ball.”

“I did the same,” I insisted.

“I offered it to Reko first,” Adrian suggested. “Like I do every night when I treat them.”

“I did the same,” I could sense that Adrian wasn’t understanding my question, in large part because I couldn’t understand it, either. I couldn’t sort out my feelings about this incident, so I began to analyze it out loud. “Why would he take it from you and not me? Since the beginning, I have been tending to, medicating, and feeding him. You just made it seem so easy. It¬†hasn’t been easy. It’s been messy and agonizing and sleepless. Is it that I paved the way doing the hard work and then you simply walked down the road I built? Why can I not walk down that road, too?”

Adrian looked at me somberly. After a moment he said, “I appreciate everything you have done.”

That wasn’t it, either. I was still trying to figure out why I felt as though a dark cloak had fallen over me, blocking out the light and fresh air. But somehow the words I was saying made Adrian feel he had to say thank you. I wasn’t looking for credit; I wasn’t resentful. I was just¬†confused.¬†

And then, I couldn’t speak anymore.¬†

In my head, however, I mounted a StairMaster, climbing the same steps over and over, each one leading me to understanding. As I marched, I thought about my interactions with Ladu over the past few days. I also read veterinary recommendations and personal anecdotes about medicating techniques. I escalated in place all night, even as I slept.

When I woke up, I walked into the kitchen and said, “Adrian, I think I understand what happened: because I was forcing Ladu to take pills when he was really really sick, he feels apprehensive now when I try to feed or medicate him. Because you started medicating him after he began healing, he still associates them as treats from you.”

Adrian nodded, the steam from his coffee fogging his spectacles. 

I continued. “I didn’t do anything wrong. I took care of him the best I could, but he was very ill. It’s like the canned chicken: he won’t eat it now because he vomited so many times after we gave it to him. It didn’t didn’t cause the vomiting — the ulcer did — but for him, that briny chicken is unpalatable now.”

Adrian stared at me. “Yes, of course that is what it is. Of course you didn’t do anything wrong, Saraswati.”

“You already knew that?” I asked in astonishment. “I had to figure it out! I kept thinking about what I must have done wrong because how could Ladu not trust me after all of my care? He feels better because of it, right?”¬†

“But that isn’t how he sees it,” Adrian said. “He doesn’t know that it is medicine let alone that it has been helping him. But, he trusts your caresses and kisses and nurturing — he returns to you over and over again for that affection. He trusts you.”

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Over this past year, since I discovered that I am autistic, I have reflected on so many events in my life, recognizing the attributes that had previously gone unnoticed or misunderstood. Examples of my concrete thinking, echolalia, stimming, and rigidity provide context for my failed relationships and my inherent “otherness” (an otherness I, incidentally, celebrate and revere).

Despite the efforts of my black-and-white thinking, I have learned that single autistic traits are not neatly and directly linked to single circumstances, the way a tugboat pulls a barge over the water. I have also learned that individual circumstances are not independent of each other. They are connected, rolling and receding like waves on a beach. My autism and my life experiences are most akin to the complicated ecosystem found in coral reefs, multitudes of species interacting with each other, the sun, and the sea.

For example, when I reflect upon the last two weeks at The Chand Bungalow, I see many, many ways in which my autism influenced how I handled Ladu’s diagnosis and subsequent care:

1). I fell out of my routine. I love my routine. It has been carefully crafted over several decades. It incorporates my special interests; assists me with some of my interoception challenges, since my meals and bathroom breaks are scheduled; and helps me with my executive function, as my many alarms encourage me to switch from one task to another .

I have watched Adrian complete his projects and still monitor Ladu. I don’t know how to do that. I became singular-minded and rigid, unable to leave Ladu’s sight for longer than a minute or two. Taking care of Ladu became my one and only task. I didn’t think to have groceries delivered or to bake bread for easy lunches. Instead, I opened one can of pea soup for each meal and gnawed on frozen, soggy berries when I ran out of fresh fruit.

2).¬†My affective empathy overwhelmed me. I didn’t just sense Ladu’s discomfort; I felt it. I knew when he wanted to be touched and when he was too nauseous or painful to even listen to me talk. I knew when he wanted to be wrapped up with his giraffe-print blanket into a little kitten burrito and when he wanted to be on top of the covers, with nothing restricting his movements, fresh air circulating him.

Affective empathy is a wondrous magic. It helped me be a strong and capable caregiver. Like an essential oil, it is pure, powerful, and lingering. That potency needs to be handled with kindness and patience. I had harshly self-chastised for the stress and guilt I felt over Ladu’s distress. I could have instead taken time to meditate or journal or dance … all while maintaining my Ladu-watching mode.

3).¬†My cognitive empathy underwhelmed me.¬†As powerful as my affective empathy is, my ability to see from another’s perspective is a struggle. I could feel Ladu’s misery when I pilled him, but I couldn’t understand why he wouldn’t simply take the medication when it was wrapped in a piece of food. It was like a math formula to me:

Misery = Forced Pilling ‚ąī Misery¬†= Quickly Swallowing Pill in Meatball

Because Ladu wasn’t learning this calculation, I felt that I had failed him. This began a cycle of self-loathing and self-criticism.

I couldn’t see that the formula really was:

Misery = Pain + Nausea + Hunger + Yucky Tasting Medicine

4). My perseveration deepened as I tried to figure out where I went wrong. Sometimes this replaying and analyzing helps me process, as it did when I climbed that mental StairMaster to figure out why Ladu wasn’t taking medication from me. Sometimes, however, the recapitulation can transform into a fixation. I believe this is what happened when Adrian was out of town. I spent the twelve hours between pilling Ladu preoccupied with pilling Ladu. I wasn’t finding a solution or an awareness; I was simply ruminating over the last dose and dreading the next one. At that point, it was as though I was sitting on a stationary bicycle and expecting to ride across the country.

5)). Alexithymia¬†and wobbly oral communication skills created a misunderstanding between Adrian and me. I was not able to identify why I felt uneasy when Ladu took medication from Adrian and not from me. I then tried to express that confusion in conversation, which for me is like painting a fraction of a cityscape — maybe just the sky or part of a building — and expecting the viewer to recognize the location. This misrepresentation made it seem as though I was begrudging my husband his success. This could not have been further from the truth. In this situation, it was resolved, but in most of my relationships, these miscommunications have lead to abrupt dissolution.

6). I began to worry that Ladu didn’t know that I love him with all of my heart.¬†Over the past forty years, I have been told on more than one occasion that I am cold, emotionless, detached, and disconnected. Many people have tried to “fix” me before cutting me off, sharply slicing me out of their lives as if I were mold growing on a block of cheddar cheese.¬†They felt that I do not know how to love.¬†Does Ladu feel that way?¬†I wondered.

But, even as I type this, Ladu is curled in my lap, purring. He puts one paw on the keyboard and tilts his head back to gaze at me, as if to cajole me to focus my attention entirely on him. He rubs his face against my chest and I kiss him.

This exercise has been productive, I think. I have learned much about myself and my process. I have information to reference when I start to feel stuck, tight, troubled.

I took the clock apart to find out what makes it tick. I have examined the mechanisms, the gears, the springs, the weights, the bell, the pendulum. Now, I carefully put it back together and close the beveled glass cabinet over the clock face. This moment is for me to sit with Ladu and Reko, love and sunshine swaddling us together, timeless and true.

 

 

© 2018 Saraswati Chand

 

 

Credits:
Cat images —¬†https://emojipedia.org/cat-face/

 

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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.

1.

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.

SPD TYPES

2.

 

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

3.

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

 

CREDITS:
1.  https://www.dailymotion.com/video/x6enmby
2.  https://www.spdstar.org/basic/subtypes-of-spd
3. https://www.growinghandsonkids.com/interoception-8th-sensory-system.html

 

 

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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 beloved 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 verbal vs visual vs pattern 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. I honestly have no idea what my process is. I think in words but when I am working on a section of my novel or an analogy for my blog, I become a part of the scene more completely 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 just thinking about it in words, I imagine a game of Tetris, pieces matching up so neatly that the screen looks like this:

Walking Reko

4

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

Routine

5

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 breakfast with Loverne next Sunday, my day will typically look like this:

Tetris Planning

6

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

7

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

Game Over

8

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.

 

 

CREDITS:
1: https://maguibg.deviantart.com/art/Tetris-GIF-316929898
2: https://robotwhale.wordpress.com/2014/06/11/30-days-of-python-day-3-tetris/
3: https://giphy.com/gifs/tetris-RqBGR6IWKwBAk
4: http://www.graphicsbuzz.com/graphics/original-tetris-graphics-45270e.html
5: http://www.teamliquid.net/forum/general/86678-oxford-university-tetris-could-reduce-trauma
6: Tetris Planning: https://www.pcworld.com/article/2040745/computer-program-creates-8-bit-art-by-playing-a-game-of-tetris.html
7: https://gfycat.com/gifs/detail/FrequentAliveEastsiberianlaika
8: https://www.mathworks.com/matlabcentral/fileexchange/28985-matris-v0-10-10-09sb-for-windows?requestedDomain=true
9: https://www.buzzfeed.com/robinedds/this-super-fast-tetris-game-will-hurt-your-brain?utm_term=.rjwAQOe90#.hj8p2oD76

 

© 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. “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 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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