To Feel or Not to Feel: Where is the Empathy?

At 15, my Summers were full of sunbathing with friends on trampolines, bike riding, and trips to my best friend's cabin in Gaylord. Care free and full of nature, spending most of my time outside - doing as I pleased.
Around 8 am on one of those lazy Summer days, my ignorant bliss met my best friend's voice sobbing on the other end as she told her father had died of a heart attack in his sleep. I never heard that kind of pain in anyone's voice before - she was shaking, her nose was running, and she could hardly form intelligible words. We had planned to leave that morning and go to the cabin with him that day. On the other end of the line I was silent, I stared blankly at the wall and held the phone to my ear as I listened to my friend cry. Her sister grabbed the phone and begged me to get there as soon as I could.
I found my friend crying hysterically and  hyperventilating on her front porch. The house was engulfed in grief as her mother and all seven of her siblings walked in and out of rooms, lost. It was completely heart wrenching. I had no idea what she was going through, but I was there. There to listen, to cry, to hold. I was there. I was strong. I was proud of myself.

20ish years later another best friend lost her mom. After losing my own mother the year before I knew exactly how it felt and what she was going through yet I could not be there for her or attend the funeral. I was not strong enough to deal with the empathy that I felt.

Much of my life through my 20s I seemed cold, logical and calculated. I recall not understanding some of the things that made others sad or angry, but clearly I had some level of empathy that did nothing but increase over time with life experiences.
Anybody with autism has heard the claim that we do not experience empathy and it's a hurtful claim (so many negative connotations due to the whole sociopathic aspect of it).

Is this learned? Is it conditional? Is there a varying depth of empathy as Psychology Today claims? Doesn't it display a lack of empathy to blanket label autistics like this?



Taylor, Steve, “Is Autism Really an "Empathy Disorder"?” Psychology Today, 17 May 2019, https://www.psychologytoday.com/us/blog/out-the-darkness/201705/is-autism-really-empathy-disorder.

The cloud

My parents died in 2017, following a rapid decline in health the year prior. Maybe someday I'll tell you more about that. But for now, I'll tell you that the resulting depression has been debilitating.


I pull my legs jerkily through the thick and murky air as I stare forward, eyes unfocused with a definite sadness behind them. The cloud has been raining down over me in a deluge today-like most days-however it never shrinks in size or changes from the darkest shade of grey. Thick and bulbous with lobes like a mammatus cloud, ever present, ever drenching the world around me. Through a haze I see objects, people, they move out of my way as they notice my struggled gait. I'm at Target, I'm with my sons. I'm trying.

I cried. Oh I cried like I have never cried before. Day, night, at work and at home, even in public sometimes...dramatically I cried. I wailed. I screamed. In the shower, on my bedroom floor, on the bathroom floor, at my desk at work, driving in my car. That kind of pain wasn't something you can just set aside and deal with at a better time. I have never felt that kind of pain.

I have worked at concealing the depression. It mostly involves not dealing with it. Sometimes I wake and my first literal thought is 'I don't want to be here'. I stare up at the ceiling, listening to the thought on repeat. Eventually I shove myself out of bed, tilt my head to look at the cloud above me, and hope that the storms won't be so bad today. Maybe someday it will be white with the silver lining. I know my kids should be that silver lining. Right now it's a light stone hue and the slightest sliver of silver lining is easily swallowed most days.

Drowning in Slow Motion

I am both alive and dead at the same time. My existence is poetry written by an unknown hand, whipping me through time in erratic crests and troughs and leaving the depth of life heavy on my chest. The trouble is when you are numb, a fierce regret is all that can take it's place making you realize you've been drowning in slow motion for years.  So many years.

Don't Just Don't

Everyone is a 'little bit' autistic.

No. They. Are. Not.

He enters the front door, steps aside and closes the door, shuffling off his shoes.  As he slides out of his shoes and shrugs out of his too-big coat he begins speaking of his day.  He sets his lunch box on the kitchen counter and re-enters the living room, his voice never pausing.  My ears throb.  With each syllable of each word the ear drum beats the rhythm of a song that I do not want to hear. I can't focus on those words and I grow more and more angry, wanting the pulsing in my head to simply end. I close my eyes to try to block it out. I shake my head side to side and slap my ear when he's not looking. I start screaming in my head and if I don't leave the room soon everyone else will hear the same screaming.
This is my life. Does it sound like yours?

Her arms reach out for me, unnoticed by her I shrink my chest back, turning my face away a little but moving forward and obliging. I didn't want to be rude. Nerves jump in my stomach at the expectation of what I know comes, as it comes every time.  My stomach turns from the touch as it does with every touch. I can still feel the weight of the arms hours later as they pulled me closer for that brief time. I still feel sick, hours later.
This is my life. Does it sound like yours?

I never did like family holiday parties. The food table is neatly lined with platters of special holiday fare-the texture and smell of most I prefer to avoid. After dinner the men watch TV while the women clean the dishes in the kitchen. There's expectations. And I am lazy. Girls these days are so lazy. I sit with the men and don't talk the remainder of the evening if I can avoid it. The passive-aggressive comments are far more desirable to the embarrassment of my uncontrollable retching as I react to those smells and textures.
This is my life.  Does it sound like yours?

But they get it, they sooooo get it now.  You see, they can read all about autism. So of course they understand now.
After all, everyone is a little bit autistic.

Autism Acceptance Day

About ten years ago, my husband and I had traveled to Ohio for a wedding while leaving our son (who was one at the time) with his sister and her boyfriend at our home in Lansing.   It was a rare opportunity for some adult time, literally the first time since he was born, and we were excited for our weekend getaway.  After driving almost four hours to where the ceremony was to be held, we found the white church with a white picket fence on a dirt road in the middle of no where a la horror movie style. There were no hills or trees to run behind if a murderer was chasing you, it was all flat as far as you could see.  We found our seats on the bride's side and I anxiously waited to see my friends, two of which were bridesmaids, to walk down the aisle.  The music began and I turned to see the wedding party walking down the aisle.  There was a lot of purple.  There was a lot of eyeshadow.  I was not impressed. 

Normally in this situation you would not say anything.  But not me.  I was a rude, obnoxious, and conceited person and I had to ask why all the purple?  I told them how awful it looked.  I tried to convince them I was right and they were wrong.  I don't know how I had any friends.  Ever.  This was the single most embarrassing thing I've ever done and to this day I still don't know how I kept those friends. 

When I was diagnosed at 27 with Asperger's syndrome (a form of autism) and two years later found ASPPIRE, who helped me with the social coaching I badly needed, I understood what happened.  I was always too proud to admit that I had a problem but today I can admit that I struggle with theory of mind.  Theory of mind is the ability to attribute mental states — beliefs, intents, desires, pretending, knowledge, etc. — to oneself and others and to understand that others have beliefs, desires, intentions, and perspectives that are different from one's own.  Just knowing that, I have been able to have a new perspective and proactively stop myself from saying things that are rude and obnoxious...most of the time.  I did say I still struggle, after all. 

Now, I just want to take a moment and thank those who have helped me get this far in life.

First and foremost ASPPIRE.  For without them I wouldn't have the rest of this list.  It's truly AMAZING what knowledge can do to change your life.

My friends in Bay City, who put up with a lot of my crap for a very long time.  I was rude and selfish and you still stayed by my side.  I'm sure if I stayed on the path that I was on I would probably have lost you by now.  I probably would not have had the courage to do half of what I have done without you:  Especially you Stacey Bourcier, who I still talk to every day!

My church family at Holt Lutheran.  Especially Kerri Henry and Ilona Harns who were two of my first friends and encouraged me to attend church and join organizations like the LWML and the PTO.

My friends with autism and/or social anxiety I have met both through and outside of ASPPIRE on my own.  Way too many to name, and I don't want to out you on facebook if you don't want people knowing you have those problems. 

The school and staff at Holt Lutheran who have made parenting with autism so much easier for me.  I don't think without their support and constant communication I could as effectively support my children.  You are their mom for 40 hours a week. 

My own family who have slowly come around to accept who I am and why I do what I do.  It's not easy admitting to others who would call this invisible disorder an excuse or scapegoat. 

My friends who constantly support me to be a better self:  Stacey, Kady, and Erin.  You guys are the best!  You don't know what your friendships mean. 

Patience

I lived nineteen years with a person I never knew.  When I was sixteen (and he was 29) most of our interactions consisted of both of our eyes fixed on the green broken ceramic tiles of the floor as we would pass each other in the hall.  He would go in his room and shut the door and I would go through the adjoining kitchen with the same broken tiles and head out the door to school or work or wherever. 

One time I was playing across the street with a girl my age who was visiting her cousins who lived there which also happened to be one of Kevin's friends.  We were playing in the garage when he past us with about ten of his friends and didn't even look at me.  He was probably a senior in high school, I was in kindergarten.  He told my mom to tell me he wanted me to never go back there.

When I was about thirteen I was eating cereal at the kitchen table and he came in and stood by the window waiting for a ride.  I was startled when I randomly glanced up to find him staring at me with a sneer on his face.  I had been chewing with my mouth open.  I froze and stared back down at my cereal until he left.  The loud force of my cry as I burst into sudden tears sent my mom running into the kitchen.  For someone who didn't want to be a part of my life, for my entire life, that was too much to handle.

I still don't talk to my brother.  When I met his girlfriend at a family funeral I walked up to her and introduced myself.  You must be Kevin's girlfriend?  I'm his sister.  They had been dating three years.  I pointed to her finger, what's that?  An engagement ring.  I added her on facebook hoping to have some sort of insight into his life.  We remained friends there for about a year and a half...until I started coming out of the closet more about autism and other medical issues I'm trying to sort out.

I get the feeling that very few people in my family believe me.  Between my aunt blaming me for not taking care of my parents who live two hours away, and my uncle becoming angry because I complained that I could not identify and clean this obnoxious smell at my parents house (hello!  sensory processing disorder!) I give up on my family. I don't have the patience if they don't have the patience.  I'll just go on doing what I'm doing, trying to get to where I need to be.  It would be nice to have the support from them but I have my church family my mom's family and a handful from my dad's.

I did not ask for this.  I did not ask to be a failure.  I did not ask to live in a trailor that is falling apart and not work full time so that we could live in a decent house and have a decent life and help my parents by giving them money and helping them clean their apartment more.  I get absolutely no form of government assistance for this disability and I am TRYING to be a productive member of society.  I can't even pay my student loans back for a degree I barely use.  I am trying so hard.  If someone cannot understand that I have anxiety and sometimes cannot drive to Bay City or that I cannot handle certain sensory issues and it is interfering with me giving my parents what they need and deserve.  I am doing everything I can to change all this.  YOU don't know what this is like so stop judging me. 

A Little Goes a Long Way

All of the desks formed an arc around the room, facing a wooden lecturn in the center.  This room had only one exit, a door in the corner, that all the desks faced away from.  The walls were blank with no windows, other than those that separated the teacher's office from the room.  Each day for a month I sat in that desk, staring at the podium, feeling sick.  I observed the teacher each day leaning casually on the lecturn as he spoke to class.  He waved his hands animatedly as he spoke to us, telling us crazy and inappropriate stories as the smell of his blueberry candle permeated the room.  Eventually it would be me standing in that spot....this was speech class. 

I had never NEVER spoke in front of a class.  I never NEVER raised my hand to answer a question.  I always looked down, always occupied myself taking notes and trying not to be noticed.  I never made eye contact with the teacher, because they took that to mean that you wanted to answer a question.

I didn't know what I was going to do so I signed up for the latest slot I could.  As I watched the others go before me, I was in complete denial I was going to have to do this.  I considered transferring schools.  I could get up at 6 and get on a different bus and go somewhere, anywhere else.  Mother wasn't on board with this idea and I had to come up with something quickly.

A few days before my imminent demise, it was another student Sara's turn.  She stood behind the lecturn and began unpacking a bag placing things on a table next to the lecturn.  She took out ziplock bags of vegetables, a bottle of water and several bowls.  She took apart one of the bowls that had a strainer component, added the lettuce and water; and spun the device around with a crank.  She said the device was called a salad spinner.  My attention was entirely on that spinning object the entire time.  She was a genius.  She did a 'demonstrational speech' by making a salad and speaking as we watched her spin the lettuce dry.  I realized I could avoid all of that anxiety inducing eye contact simply by making them watch my hands as she was doing now.

A few days later, it was my turn.  I had to stand behind that old scuffed-up podium, with 20 sets of eyes upon me.   Before I could get more than a few words out, I nervously fumbled at the container to get it open and sent it flying across the room.  It hit the wall and fell to the floor.  The world stopped. 

From that day on, whenever I had to do any public speaking this memory immediately surfaced.   Each and every time.  I stuttered through everything I had to present with burning red cheeks trying to push the image away from my thoughts.

Yesterday I stood up and spoke about my life, autism, and treatments.  I didn't stutter once, my face was not warm and I forgot about the torturous high school speech class until I sat down to write this blog.

A little calming oil goes a long way.