In Praise of Fathers on the Autism Spectrum

Father's Day 2013

Today I spoke to my Dad for three minutes on the telephone to wish him a happy Father’s Day. Dad is notoriously uncomfortable on the phone, so we keep conversations short. It does not matter. Dad knows I love him. We can cram a world full of emotion into the tiniest sentence.

This brief exchange compelled me to examine fatherhood on the autism spectrum.

My Dad worked incredibly hard to support our family. Daily, he coped with anxiety and insomnia. To fit in with his co-workers he memorized jokes, stories and scripts.  He stuck to lists and written instructions for organization and daily living. Long before Asperger’s syndrome diagnoses reached our family, he handled life with aplomb.

fathers day 2
Dad, singing at a campfire.

I am deeply proud of my father.  Please permit me to generalize wonderful things about my dad to all fathers on the autism spectrum:

  1. They share with you. I once asked my Dad how to tie a knot. Heh. For the next three weeks we explored the history of knot making. Not only did dad personally show me how to tie dozens of fancy, complicated knots, but he gave their full background and a stack of illustrated books to study.
  2.  They will be honest with you. At six I asked my dad if Santa was real. A pained expression crossed his face. He said, “The spirit of Christmas is real.” I pressed, “So Santa’s not real?” He shook his head, “Santa is an idea. He represents the giving spirit of Christmas.”  Over thirty years have passed, but I remember the moment vividly. He respected me enough to tell the truth.
  3. Their enthusiasm is contagious. When my Dad talks about his favorite subjects, he glows. You not only see his incredible joy, but it washed over you. He loves spelunking and mineralogy. Ten minutes with him and you will dream about sparkling crystals and mysterious caves
  4. They are loyal.  Public school distressed me. Every four months or so, I crashed and missed three or four weeks straight. The school system so harassed my mother over absenteeism, that  a school administration meeting was scheduled so my father could attend. Wild-eyed and fearsome, Dad defended me so staunchly that the issue was resolved for the remainder of my school days.
  5. They will understand you. My Dad always had great compassion for my war with anxiety. When I was 25, I dropped out of college for the fifth time. Heartbroken, I felt like an utter failure. He took my hand and told me it would be okay. He promised me that as a family we would find a way to finish school and select an agreeable career.  In the ten years it took me to get my degree, he never begrudged my tuition. He accepted my struggles long before my Asperger’s diagnosis gave a name to my difficulties.

Adrift in a Sea of Viruses

Adrift in a Sea of Viruses

The hardest thing about transplanting from sunny, arid New Mexico to lush, seasonal New England is not the climate. The hardest thing about moving to New England is sickness. We are awash in a sea of viruses.

Boston looms forty minutes away. Germs must hold massive conventions there, planning annual pandemics and local outbreaks alike.  Our first year here we experienced an unparalleled infectious onslaught.

We arrived in New Hampshire during the special time of year known as “Norovirus Season.”  As sure as leaves drop in fall, digestive systems convulse in late February. Alone in a new city, without a car or friends to help, our inaugural bout with this awful illness left us weak and drained. We ran out of everything— soup, crackers, Gatorade, even toilet paper.  I vowed to never be unprepared again.  Our pantry shelves now creak under the weight of Sprite and Campbell’s soup.

On his first New England birthday, my husband became so ill that he almost saw a doctor.  Several days later I wound up in an urgent care since I coughed up blood. The bored doctor told me I strained my throat coughing and that I should drink fluids because I had a virus. My husband smirked and rasped, “Told you it was just a cold.” Eight weeks later, I smirked back—we had pertussis—whooping cough.

We were miserable. A pertussis coughing fit is like trying to gargle your lungs. You need to cough more than you need to breathe, and your lungs would feel much better on the outside of your body. The sensation is worsened by lying down.  We wound up sleeping in different parts of the house due to unsynchronized coughing spells. We endured convulsive coughing spells for months.

And then, we came down with H1N1…

Virus City

Seasoned New Englanders explained that the first year is the hardest for newcomers. Our bodies would adapt to regional bugs and we would healthy again in months. Heh.

Five years have passed and we still feel like the sickest family on the Eastern seaboard. Egor and I discussed this at length the other night. Why are we always ill?

Part of it is exposure. Big cities breed hearty immune systems. My husband and I grew up in hometowns with a surprising commonality—a scarcity of international traffic.  Seasonal illness was rare in my secluded and sun-drenched town. Likewise, even large Russian cities were isolated in the 1970s; few people had permission to leave the city, let alone travel worldwide.  Sickness was regional.

Culture also sheltered us from getting sick. Egor described how Russians responded to fevers. A doctor was summoned the moment a child had a fever.  He prescribed a week of bed rest following the last day of fever. Sickness seldom spread school wide. My mother reacted similarly, considering it shameful to send an ill child to school.

Time, however, changes everything. No one legitimately fears contracting diphtheria, typhus, or measles in modern schools.  Civilization mixes germs and people. Sheltering a healthy child from circulating viruses is counterintuitive.  School provides an immune system education as well as an academic one.

Tyoma will need it.

Our immune systems have changed, adapted to New England. We are sick less often, less intensely.  What hasn’t changed is our brains’ response to sickness. Under the thrall of illness, our self-management skills vanish. Ill health leaves me mentally hollow. I cannot focus, organize, or tolerate strong sensory input. I am impaired. Tyoma, at six, is much more so. A cold sends him zipping back toward toddlerhood. He loses his words and anxiety and irritability engulf him.

If I wished for one magic thing, it would be a steadfast plan for sick days. I accept the toll they take on my brain, but something is missing. Not a medication, or a diet, or a lifestyle change, but a pen and paper sort of thing–a way to use my gifts preemptively to tide me over on the ill days. I need the mental equivalent of my stash of sprite and toilet paper.

This is my grand challenge; to equip myself for the next round of viruses. Wish me well!

 

 


Norovirus Creations
Recovery from February Vacation
Losing the Battle
Summer of Infernal Illnesses

She Can Fix It!

She Can Fix It!

I knew it was January because another car engine sat in our living room.

After the excitement of Christmas faded, my restless mother decided to rebuild our 1970 Grand Prix. She didn’t have a shop or a mechanics education, but she did have a library card and a neighbor who would answer countless questions for a case of beer.

Mom’s fascination with mechanics began with an old gasoline powered washing machine. At six, she disassembled the monstrosity and stacked the pieces together in the most sensible arrangement she could think of.  When she reported her experiment, her irate father insisted she put the washer back “the way she found it.” Mom assembled the pieces more convincingly, and plotted her next mechanical adventure.

In the 1970s, the family passion was underwater photography. Factory-made underwater camera housings never satisfied Mom. She had no tolerance for poor design or awkward functioning.  To meet her specifications, she modified every camera, strobe, and device she came across.

Consequently, our guest room housed projects, not people. Spread on the floor, our good sheets hosted O-rings, tiny bolts, clips and mysterious metal bits. The arrangements seemed haphazard, but Mom knew if anything was out of place. Once, I tiptoed across one of her projects, lodging a teeny screw between my toes.  I tossed it back on the sheet absently. Three days later, Mom advised me to hand her future wayward parts.

Mom and the Engine

In the mid-1980s, a series of hurricanes wiped out my parent’s favorite diving spots, requiring them to economize for more exotic trips. This meant long boring winters for my mom. With no exciting place to go or camera gear to tinker with, she turned her eyes and hands to auto mechanics. For most of the eighties, engine re-builds swallowed late winters and early springs.

One year, Mom decided to rebuild our 1970 grand prix Pontiac. This was to be my car.   Some kids got junkers or fancy sedans. My mother built me a racecar–a 455 cu in (7.5 L) V8 with a hot cam.

The Pontiac turned into a family member before I ever drove it, settling itself in our living room.  Its metal and grease smell permeated our house in a pleasant, friendly way, like the subtle cologne of a favorite aunt.  On windy March days, curing silicone gaskets gave off a vinegary odor, reminding me of Easter egg dye and spring holidays.

As spring ushered in desert wildflowers, I helped out, holding casings or pumping molybdenum lubricant into joints. Mostly, I watched or poured the occasional glass of wine.

One glorious April day, quite close to my birthday, the neighborhood assembled to celebrate the placing of the Pontiac’s engine. Champagne filled our glasses while our loving neighbors popped the tops of Budweisers.  Sputtering to life amidst cheers and whistles, we christened the car “The Blue Bomb,” since the engine rumbled “Baa-bomb—baa—bomb—baa–bomb.”

1970 Grand Prix

The occasion was momentous enough to warrant a visit from Dad, who famously despises social gatherings. Nevertheless, he entertained a cluster of senior ladies for a full twenty minutes, before stoutly shaking hands and excusing himself.

Mom, the guest of honor, discussed automotive mechanics until her companions became uncivilly inebriated. The balance of the evening was spent at the kitchen table, nibbling nachos with wives and daughters. The specifics of these conversations are lost on me but I can recreate the mood in a flash.   The atmosphere was convivial; a feeling of warmth and acceptance united the women around the table. Mom was the neighborhood Rosie the Riveter. “She can fix it” became “I can fix it.” We all sat a little straighter, spoke a little louder, planned a little bigger.

A week after the engine-starting, Mom, Dad, and I took the Blue Bomb on its inaugural drive.  Mom planned the maiden voyage with precision. A new engine must “settle in” through a complex combination of long distance driving and oil changes.

We drove to Gallup, NM and back. Dad followed us in the family van, filled with such a quantity of tools that care was taken to distribute their weight equally over the vehicle’s axels.

Windows down, we zoomed across the weedy, flowery desert. As we approached Truth or Consequences, New Mexico, Mom opened the engine up further, tearing along at maximum speed to seat pistons and O-rings. Toes tightened and the Pontiac resonated.

As sure as Vikings exalted the majesty of the open water in their longboats, my mother and I embraced our own frontier–a car speeding amidst a sea of desert flowers. A future of possibilities swam before us; we can fix it resonated in our ears.

The Fan

A Birthday Wish

Dark Nest

Broader Autism Phenotype Quiz

Histoplasmosis and a Senior Aspie

Eye Doctor

My father is a man’s man. In the 1960’s he donned leather gloves to shovel ensilage for my grandparent’s dairy.  A weightlifter and physical culture enthusiast, Dad out-shoveled both my mom’s brothers. He even kept pace with the seasoned farmhands.

Dad’s zest and hard work earned him a case of pulmonary histoplasmosis.  Histoplasmosis is the sort of illness you’d see featured on an episode of House, M.D. or a sensational TLC documentary.  Caused by the fungus Histoplasma capsulatum, histoplasmosis usually attacks the lungs causing tuberculosis-like lesions.

Fifty years after the infection, Dad’s lungs still show tell-tale scarring. At the time, he experienced the illness as “a bad flu.” He recovered in a few weeks and resumed his job of impressing my mom.

In the mid-seventies, strange ocular symptoms plagued Dad. Persistent iritis, blurriness and blind spots interfered with his photography. He saw several specialists until he happened upon Dr. Holstein. Looking over Dad’s lab work, Dr. Holstein said, “Hmmmm. Looks like you’ve ruled about everything out.  Except ocular histoplasmosis. That’s a doozey.”

Histoplasmosis is a sneaky illness. It’s recurrent and can return to infect other parts of your body.  Ocular histoplasmosis inflames the eye’s blood vessels, often causing permanent vision problems and blindness.

Dr. Holstein treated Dad’s symptoms for several months.  As the weeks passed, Dad and Dr. Holstein forged a friendship of sorts. The two of them loved sailing ships and bonded over their shared admiration. Soon, Dad’s appointments were scheduled near lunch and closing time so they could gab about sailing at length.

I imagine Dad and Dr. Holstein engaged in a convivial conversation, describing sailing rigs with enthusiasm and volume. Mom and Mrs. Holstein even became telephone-friendly, although our families never socialized.

Dad improved and relapsed over the next ten years until his ocular symptoms vanished entirely.

Until a two months ago.

This sent Dad to a new ophthalmologist—Dr. Holstein retired. Dad gave his medical history to Dr. Lazarus who piped up about Dr. Holstein.

Dr. Holstein! Oh yes. He’s a strange bird. Never came to any of our parties. We must‘ve invited him to a dozen parties with the other eye doctors in town. Once I asked him, “Why don’t you visit with us? We’re your colleagues!”  Do you know what he said? “I don’t come because I have nothing in common with any of you and I am not interested in socializing.”  Huh! Strange, strange fellow. He’s 92 and he’s building a sailboat in his front yard.

Dr. Lazarus’s blunt assessment of his colleague aggravated Dad.  Our family expects respectful behavior, especially amongst professionals. Furthermore, Dad wondered, “What is wrong with honesty and hope?” Dr.  Holstein deserves applause, not disdain.

Dr. Lazarus even dismissed Dr. Holstein’s diagnosis. Dad had “allergies,” according to him.

Weeks have passed. Dad’s “allergies” lingered. Additional testing revealed that ocular histoplasmosis is indeed visiting my father again.

Carry on, Senior Aspies

Dad’s world is blurrier and brighter.  He and mom have enjoyed revisiting their affection for Dr. Holstein. The two of them plan to drive by his house to examine Dr. Holstein’s boat.

Carry on, Senior Aspies. Carry, on.