I remember being little and how much it hurt

I remembered for the first time today, what it felt like to be little, nothing more than a pre-toddler, and endure having my mother wash my face after a meal. It felt like she was maliciously rubbing my face with sandpaper.

Everything, every small, ordinary and necessary thing from hair washing, teeth brushing, washing up after meals, clothes on and clothes off...those things hurt me. I cried and screamed a lot because the people, when they touched me, hurt me. They didn't know I was Autistic. They just thought I was obstinate, defiant, too sensitive or simply disagreeable. Autism wasn't in my family's vocabulary even though many had it.

My mother would put me in my room and shut the door. I was her most difficult child she will swear by it to this day.

I wasn't difficult. 

I was Autistic.

People were hurting me. Each day, every day I hurt from ordinary things. 

No one understood why Amy was so broke and unhappy. 

I remembered the feel of my mother simply, lightly, washing my face after breakfast. I cried. I cried then. I cry now. I was getting hurt all the time. I remember now.

Mother's White Gloves

When I was a very young child, it was the 1960s and my mother wore white gloves whenever she would leave the house.

She had many different pairs. Some had raised fabric like stripes on the top, three or four lines. Some of them had buttons. All of them were similarly silky and soft.

My favorite gloves were the ones that had a small button in the center, underneath the wrist. I loved two different button kinds. One type had a smooth, shiny, mother of pearl luminescence and the other, even more favorite, were the gloves with the small, white, fabric covered button, almost crocheted looking.

I loved to touch the gloves, especially the button ones. Mom could only tolerate so much. Some days she couldn't tolerate me touching and playing with the button at all.

Read faces. I learned to look at her face to see if she was happy or mad. I learned which faces she made and when it could touch and not touch.

I loved mom's white gloves.

My First Trip to the Store after Shutdown

When I'm in Shutdown and can barely move yet I can still think clearly, I set a goal, something to look forward to whenever I feel well enough to walk again. This Shutdown I really wanted to go to Home Depot and look at their cactus.

Today, I was able to get there!! I still had to use my handicapped placard but I didn't require an electric cart. I am definitely on the mend. 

I never know what tomorrow brings. Will the extreme exhaustion return due to my energy expenditure tonight? Or will I feel strong enough to get to the grocery store and replenish my food supply.

I had a brief moment in the sun. It felt good.

Aspergers and Alone

Autistic Burnout Shutdown explained

Autistic Shutdown Burnout the Misery of being Autistic

I've grown so tired of having malady after malady that is either rare or misunderstood or difficulty to believe. Add to the mix Autistic Shutdown/Burnout or ASB for short.

My ASB presents itself first as my legs feel heavy, my body is sluggish and I start sleeping 12-18 hours each day. It progresses to the point that I have to force myself, talk myself into, getting up to get a glass of water, a sandwich or to go to the bathroom 

My breathing slows like when I'm falling asleep. My mind stops being able to focus. Then I fall into heavy sleep for hours. I stop getting hungry or thirsty. I can no longer take my dog for a short walk or walk the distance to get into my car.

It's difficult to explain. Difficult to believe. And a nightmare of helplessness to live.

There is no help available. No medication. No cure. Most people have never heard of it. So many disbelieve and attribute it to laziness or depression or malingering. It is no such thing.

ASB is the body's reaction to overstimulation, daily hyperstimulation and overproduction of stress hormones to combat daily life.

ASB turns Autism into a physical manifestion, a bodily illness that can be seen, felt and not at all understood.

One of the first times I experienced ASB was after my first ten day vacation through the Midwest. I returned home, face planted on my couch, lost the ability to speak and move, and fell into deep, numbing slumber. I lost control of my ability to function, even marginally, for a couple of weeks.

I lost friends when I could not speak to explain this physical mystery. I ended up in the hospital because my extreme symptoms caused alarm. I underwent every medical test available to rule out all the serious illnesses but no one had an answer.

I'm sure they all assumed it was "just in my head", a mental disorder I had manifested. There were no answers then, and for years. No one could tell me why my body and mind would shutdown for days and weeks.

I'm not sure how I stumbled upon the term Autistic Burnout but finally something fit together. Something made sense in the sparse writings of ASB. 

It doesn't make it any easier to live with. It doesn't make sense to most people. I try and explaining this logical construct of how the Autistic brain gets overwhelmed but I think few understand it and fewer believe me.

I'm a factory of disbelief and impossibilities. 

It feels truly helpless and awful. I become useless to the world and to myself. I cannot ask for help without lengthy explanation and if I'm shutdown each word, every small action is a heavy expenditure.

It's so miserable beyond comprehension. It can strike without warning. It is why I limit my activities, appointments, outings, even trips to the grocery store.

It's why I always have on hand two weeks of frozen meals. Why I have two weeks of dog food. And why I try and keep my laundry and dishes done. Because when shutdown hits, it is like pulling a lever that says All Stop. Every Thing Stops. Little mundane daily actions become mountains. Feeding the dog means I'll be passed out on the couch for two hours. A quick microwaved meal means I'm done for the afternoon. Bedtime ends up at 5 or 6 pm.

There is no help for me. No way to stop this bodily madness. No way to fight inertia. No way to slow the outer world down enough so I struggle less.

Autistic Shutdowns are real. They happen and they sieze and stop my life for days, weeks and months.

I don't know when this or any Shutdown will end.

Limbo.

Life on hold.

Autism