Discovering #Aspergers

Color Theory

Every adult diagnosed late-in-life with autism experiences a moment of self-discovery.  I remember the day I first wondered if I was autistic.

It happened a few months after my father had been diagnosed with Asperger’s. Dad is a stereotypical Aspie-genius. He could have his own TV series featuring his madcap  adventures.  Anyway, I had never considered myself on the spectrum.

One snowy day, I entertained my four year old son, Tyoma in our basement.  I pushed him on a swing as he interrogated me about color theory. Cheerily, I rambled on—I was born to deliver science lectures.  I suddenly realized Tyoma asked more questions about the words I used than the color wheel.

“Mama, Mama, what does ‘aggrandize’ mean?”

Three sentences later, another question.

“Mama, what does ‘chromatic’ mean?”

And then,

“What does ‘incandescent’ mean?”

I experienced an “Aha!” moment. Much of our time together followed a recurring pattern:

  1. Tyoma asks a question.
  2. I respond with a sprawling monologue.
  3. He interrupts to ask me about a word.
  4. I define it and continue with my oration.

My four year old and I could pass an hour or more like this. In fact, I’d still be in the basement lecturing, if given a chance.

I wondered, “Why am I using words like aggrandize with my four year old?” I speak to my son as if he had my vocabulary. At three, he used words like “synchronous” because of it.

For a year he’s quizzed me over my bounteous vocabulary. This was the first time I realized my vocabulary not age-appropriate.  Asperger’s children often speak like little professors. How much of this comes from parents who don’t think to simplify their speech? Do I have theory of mind issues?

I contemplated my life, connecting my experiences to the massive quantities of text I read about autism and Asperger’s.  Do typical mothers rattle on about color theory to entertain their preschoolers? Do they say “chromatic variation is an aspect of the Doppler Effect” in an offhanded manner, while pushing their child on a swing?

For a split second, I saw the whole picture:  All my life I felt different–remote and disconnected from others. I failed at tasks others juggled with ease. My intellectual gifts never translated into consistent success. After living in New Hampshire for two years I had not bothered to make a single friend.  Autism seemed to explain it all.

I dismissed each thought as imaginative speculation. Yet—my heart responded with the same joy (and fear!) as the day I saw the double stripes on the pregnancy test that preceded Tyoma.

Grateful

I pondered this revelation for six weeks before immuring myself  in literature and first person accounts.  The stories told by late-diagnosed autistic adults guided me and gave me courage.  I rest in a place of joy, contentment, and compassion because they shared their journeys.

I am very, very grateful to them.

Autism and Empathy: The Yogurt Incident

T's Dream

Sleeplessness
Recently, two consecutive nights of sleep vanished into the maw of an autistic child’s dreams.

The first evening, nightmares obliged me to haul my massive pillow collection to my son’s room for an all-nighter. I tried to rest as he whimpered and wiggled.  His dozing body sought me out, burrowing into my back and belly.  I would have slept on the floor, but I sensed he needed my physical presence to remain asleep.

Our second sleepless night opened with Tyoma’s hysterical complaint of not needing sleep, ever.  Our usual tricks did not work.  His stubborn frenzy kept him up hours past his regular bedtime.

During the second night, recurring nightmares left him wailing for company. At 5:30 a.m., he launched an irritable, fussy day with demands of an immediate bedroom vacuuming. Hours of perseveration, arguing and intractable obsessiveness followed.

For a child who sleeps and wakes regularly, it took a jarring event to shake his sleep schedule so intensely. What caused his nighttime terror?

The yogurt incident.

The Incident

Thursday afternoon during snack time, Tyoma amused his peers by twisting his yogurt tube. It burst, spattering the kids around him.

One of the spattered children was Hardy. Hardy has multiple food allergies. Hardy’s milk allergy is so acute that his contact with yogurt caused edema. His mother whisked him out of school for the day.

Tyoma related the experience after school.  His conscientious CM, Crystalyn, filled in the remaining details—Hardy was okay and Tyoma expressed concern for his friend in an expected manner.

T did not want to talk about the incident further, so I assumed all was well.

Until, of course, he woke up with his first nightmare:

Mickey Mouse (his plush) and he were sailing on his bed in the ocean. Suddenly, Mickey began to choke and turn blue, red and then purple. Mickey swelled up and fell in the water. Worst of all–he tearfully told me—Mickey’s face changed emotion. Mickey went from happy to sad.

The next morning, he refused breakfast.  He shook with clenched, white fists, begging to stay home.  He wailed as I buckled him into his bus seat.  Crystalyn and his para-educators worked to ease his anxiety over returning to Hardy’s afternoon kindergarten class.

Weeks later, the incident still resonates. Mickey Mouse has been consigned to the attic. The sight of yogurt tubes no longer upset Tyoma, but no amount of persuasion will get him to eat one. Yesterday, he jogged and jumped around the gross motor room, outlining plans to keep Hardy safe. “I don’t want to hurt a friend, ever,” he stated matter-of-factly.

Autism and Empathy

The issue in autism is not a lack of empathy, but rather a profound over-abundance of it. The terror of harming another person caused my son deep, psychic unrest.  Tyoma thinks and cares about Hardy. He will enforce class rules to keep Hardy safe. One day Tyoma will generalize this event, making his own rules, lists and schedules for a safer, more orderly world.

His nascent social consciousness must be recognized and nurtured. It is easy to mistake a flat or negative affect for indifference or egoism. An autistic person’s emotional sensitivity can cause retreat–a coping mechanism to protect an over-sensitive self.  I must guide my son to reap benefits from his emotional gifts instead of being crushed by them.

Digital elements: Hollie Haradon, Tumblefish Studio, Google images.

Re-Post: What to do When You Are Bored

Distribution of Books in Downstairs Library

Distribution Of Books In Our Downstairs Library

Heh. Over the summer, I had some extreme boredom moments when my son fell ill. Since my sick boy needed me nearby, I asked, “What can I do with myself and still be 5 feet away?”

I decided to categorize all my downstairs books and plot the distribution on a bubble graph. Since this wasn’t quite fancy enough, I extracted and “steampunked” the bubbles. This turned into a week long labor of  Asperger Love.

I am compelled to add, that the distribution does not include  all my books. If it did, the short story and atlas book numbers would triple. I have crates of  short stories in the spare room plus a stack of atlases next to my bed.

Yay books!

ETA: I am taking some time to read my best buddy’s novel. So I’m sharing my love of books and charts with you!

Original Bubble Graph after the jump.

The numbers are the numbers of books in each category.

Digital elements: Marta VanEck, Google charts.

Emotional Regulation and Asperger’s

Unstable

Before my diagnosis, I worried about having rapid cycling bipolar disorder. Daily, I experienced spells of heightened excitability and mental energy followed by profound boredom and lethargy. The pattern of my cycles troubled me—they lacked regularity.

After my son’s diagnosis, I observed his behavioral patterns and eventually connected them to my own.  Twice exceptional people often have difficulty regulating their emotions.

I wrote this lament the night before I came down ill with the flu a few weeks ago.  This post captures my experience of emotional disregulation.

I feel so unstable, unusable, broken.  I cannot find balance in a life full of ups and downs. Daily glee skyrockets over little things– a cup of coffee or a tender glimpse of a loved one. I am unbound, untethered and out of my mind with bliss.

A moment later, ensnared by stress and the unexpected, I am smashed and hopeless.

I lack self-regulation.  I struggle fiercely. I struggle incessantly. So does my son. We are both untied and colliding, collapsing, crushing each other until we are flat and empty.

I am a cheery person, I insist. This is my identity. I think wonderful thoughts and ask why, why, why, in an exuberant, perky voice.

Yet, when I am not enraptured with questions or drawn into a favorite task, my idle mind grinds in ever tighter circles. It winds in on itself, tighter and tighter until the center coils into a deep dark dot. My life becomes blackness.

I fight.  I bounce, pace, and whirl. It helps.  I float toward the surface again. My buoyancy is tenuous.  Soon I will be lost, spinning away to the tiniest black speck.

Each day unfolds in song and dips in and out of despair and exhaustion. It feels pointless until it feels sacred again. I live the same day, forever.

I read the books and hear the words of what to do, but deep, deep grooves are etched in my brain. Like canyons, like caverns, neurological folds block the light or reveal a brilliance so blinding that I become senseless with joy.

Numbers And Donald Duck Go Well Together

Tyoma sip

 

I might struggle with meltdowns, but I certainly know to enjoy the good moments. An hour after the above photo was taken, Tyoma opened up MS Paint and created the following merged image and caption:

 

donald

 

This is Tyoma’s homage to Mathmagic Land, the 1959 Disney cartoon featuring Donald Duck. He printed out his masterpiece and handed it to me. “This is so you know that Donald Duck and numbers are a good pair.”

Amazing. He used google images to find Donald and the numbers, saved them as jpegs, imported the images into Paint, layered them,  merged them and printed them out. And he figured this all out by himself.

I will place Donald prominently to remind myself to have courage during the occasional meltdown.

 

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