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Turn Down the Lights

Turn Down the Lights  (my brain under fluorescent lights)

Usually other people are trying to understand why my art is what it is. I have been pondering this question for awhile myself and want to share my fresh understanding.

First, I went back to review my diagnosis and the results of my autism testing.

 

A portion of my diagnostic report

The neuropsychologist noted there was a significant difference between the high average verbal comprehension index and the superior perceptual reasoning index. To understand what the significance was, I had to know what the different indexes indicated. I found this.

Okay! That made total sense! I always knew I was a visual thinker. Before I started understanding speech and being able to use speech to communicate, I had to learn to read and spell so that I could visualize what I was going to say and read it off from a blackboard in my head. Because I think in pictures and even running full color videos in my head, I have to translate the images into words, spelled out correctly and then read it off in my mind. Because my processing speed is only half that of my visual thinking speed, it takes awhile. It is even slower if I have to translate conversation from others into images so that I can understand and then back again into verbal language to respond in a conversation.  It is somewhat easier with written language than with spoken language, which is why when you read my writing, I may come across as an intelligent, articulate person. Yet, if you were to speak to me in person, especially under fluorescent lighting, you will see another side of me that may appear mentally slow.  Let me illustrate.

The painting at the top of the post is my immediate visual response to the question “How does fluorescent light affect you?”

My slowed down verbal response would be something like this.

“Fluorescent light shocks me. It makes me spasm and make noises. It makes my body twitch and I can’t keep my legs still. It is not just the light. It’s the sound too. It is like a squealing hearing aid sometimes and the sound swirls. The light swirls too. There is a pinkish fog that swirls and other colors that make me feel nauseous. I can’t tolerate it for long periods. My brain starts going dark.  I struggle just to get to the point where I can get away from the light and the noise and the swirling. It’s too much. It’s overload! I can’t do it!”

Turn Down the Lights

So there we have it! I am a visual thinker and can think with my paint and a canvas without having to interpret in between as I have to do when I communicate with words. Sadly, it leaves a communication gap when I am speaking to people whose brains work the way most human brains in this world work.

What can I do? When it involves fluorescent lighting, I made some positive changes. I changed every light in my home to LED which does not affect me adversely. Even my aquariums have LED lighting.  If I have to go to a store with fluorescent lighting, I plan my trip to get in and out as quickly as possible. If I need to wait in a waiting room where there are fluorescent lights, I look for a chair that is not against a wall because I have spasmed and slammed the wall too many times. I can take the stairs instead of an elevator with fluorescents. As much as I possibly can, I avoid fluorescent lighting.

Then, as regards the communication problems I have because of being a visual thinker, I can write, text instead of talking when possible, and to keep my visually thinking self balanced, I can keep on painting!

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Look Me in the Eyes

Eye Contact – Linda Hanson Denmark

Look Me in the Eyes

“Are you listening to me?
Look me in the eyes when I’m speaking.”
It hurts
But I can look at your eyes
Blue eyes with lots of gray
Dry eyes that never cry
Like my eyes are crying
Because you hit me
So I will look at your eyes
So I will hear what you are speaking
But I can’t hear you
When I look at your eyes
It hurts

By Linda Hanson Denmark

Humans are supposed to be able to read other peoples eyes. I have no idea what exactly they are supposed to be reading in the eyes. I am not wired for that. I can make eye contact but with quite different results.

When I was a child, eye contact was forced. I was afraid of the consequences if I did not look at my parents eyes. The result? I had a great fear of blue eyes most of my life because of my abusive father’s blue eyes, which made looking at any blue eyes extra difficult. My mom had hazel eyes, with very interesting colors and patterns. Her eyes made me squirm and I had to focus on the colors. I decided that she had turtle eyes. Eye contact hurt and never did help me understand anything better.

When I first look at someone else’s eyes, I always focus on one eye, then wonder if I should be looking at the other eye instead. I can’t for some reason, look into both eyes at the same time. I may look back and forth rather quickly until I settle on which eye to look at. Then begins an in depth study of colors, patterns, eye shape, condition, small veins showing on the white of the eye, size of the pupil, etc.

I study the colors in the makeup if it is a female wearing makeup, making a mental palette of the colors whether I like them or not. Loose eyelashes, eyelash color, length, thickness; nothing is missed. It sometimes feels like artificial intelligence in action. Scan, scan, scan, record.

If the other person is wearing glasses it gets even more complex. I study the lens to see if it is convex or concave, tinted or not; study the frames, and am absorbing and making mental images for my already very full library of memories.  Meanwhile, the words spoken by the person I am attempting eye contact with are gone. I usually have to ask the person to repeat what they said and briefly look away while I listen.

Some people believe that eye contact can be taught. If the neurological wiring is not there for reading whatever we are supposed to be reading, I think trying to teach eye contact to an autistic might be about as effective as teaching a blind person to make eye contact. The blind person may be able to learn to look in the direction the voice is coming from but they will not see.

Could the person demanding or expecting eye contact feel that without eye contact the autistic is not listening? The opposite is true. Could it be that the person expecting eye contact is uncomfortable not being able to read the eyes of the person to whom they are speaking, like the eyes can somehow mirror back their words to see how the hearer is affected by the words? That won’t work if the autistic person can’t do the looking and the hearing at the same time.

Is eye contact really for the benefit of the autistic person? Is it so that we will look less autistic? Is sameness a requirement of being human? Am I less human because I can’t hear the words and look in the eyes simultaneously?

Define human.

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Aging & Autism

When I was first diagnosed with autism I was already into my senior years. I was experiencing more difficulty in some areas and was relieved to finally have an answer and know there was not a brain tumor or something else causing my problems. The problems weren’t new to me. I had similar difficulties as a child and had then seemed to have improved to where I could live a more normal life most of the time. When my diagnosis was being explained to me, I asked the neuropsychologist why I seemed to be having more difficulties in some areas, like executive function, anxiety, and the sensory processing issues I have. She explained to me that as I developed as a child, some parts of my brain that would manage something in a neurotypical brain were not doing the job. So some other parts of my brain that already had their own job to do, took on a second job and did both. Simply put, now that I am getting older, some parts of my brain have quit their second job.

Images from my QEEG

The QEEG helped me understand what she was talking about with some parts of my brain doing extra work. Now here I am at age sixty-nine with the return of many of the issues from my childhood. My neuropsychologist explained it well. One part of my brain will send the job to another part of my brain which says “I can’t do that anymore” and sends it to another part of my brain which may or may not handle it. This slows down my processing speed considerably. Picture it as if you ordered something from amazon and instead of sending it to your current address, it is first sent through a relay of all the addresses you have ever lived at. It may take awhile before the package arrives.

I think all the time, even in my sleep. Once in college an instructor presented my Statics & Strengths class with a problem concerning bridge expansion. Nobody could figure it out including me. My brain would not let go of the problem and several weeks later, I woke up in the night, got a pencil and paper and wrote down the solution. I took it to the instructor the following day and he said it was textbook perfect. I have also had occasions where I got up in the night and wrote down a poem that had formed in my mind during the night while I was asleep. Now I have been thinking day and night on what the prognosis is for my future.

Reasoning that parts of my brain that were working overtime are now cutting back their workload, I think that as I age I will not get any worse than what I experienced as a child. It removes some anxiety about my future just to know that I got through it once. It will be easier this time because I am not being abused and I do have a means to communicate even when I am handicapped in a person to person conversation.

There is not a lot written about aging in autism. I am only speaking from my own experience because my research did not turn up any helpful information. What I have found in my own experience is that I am much more affected by sensory processing issues, like light and noise. It’s not all bad. I had a grandson spending the night recently and I went to get something from the medicine cabinet after the lights were off. He told me I have superpowers. I had not even thought about being able to see in the dark because to me it was not dark. There was enough light for my light sensitive brain to see clearly but to my grandson, it was not enough light for him to see anything.

I can’t express this better than Dylan Thomas did in his poem “Do not go gentle into that good night” from which I am quoting the first stanza.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Colored pencil drawing – Linda Hanson Denmark

I have inserted one of my own drawings to explain my application of the stanza. In my own case my vision is not dimming. My flame burns brightly but my candle is melting. I am going to rage against it by using what still works well and hoping to communicate with others to impart some understanding of what has not been well documented. If other aging autistics will do the same, perhaps it will shed some light for younger autistics who want to know what to expect. It may be as different from one autistic to the next as the word spectrum implies.

For now, I am focusing on all the skills and gifts I still have and using them as fully as possible, while my candle still has wax to burn.

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Complex PTSD and Autism

Quote from Wikipedia:

“Adults with C-PTSD have sometimes experienced prolonged interpersonal traumatization as children as well as prolonged trauma as adults. This early injury interrupts the development of a robust sense of self and of others. Because physical and emotional pain or neglect was often inflicted by attachment figures such as caregivers or older siblings, these individuals may develop a sense that they are fundamentally flawed and that others cannot be relied upon.”

Complex PTSD becomes even more complex when the abuse happens to an autistic child. Coping mechanisms that neurotypical children have may not work at all for an autistic child. In our family, the father was abusive and the mother enabled and assisted with the abuse, and sometimes just ignored it. Never did she step in to protect her children. Three of my sisters, two biological and one adopted, developed multiple personality disorders from the abuse and have required years of therapy to help them make somewhat normal lives for themselves. One of my adopted brothers has an alcohol problem and the other became an abuser himself. I also spent several years in therapy years before the autism diagnosis was made. I was at that time (1990s) diagnosed with PTSD, Selective Mutism, Recurrent Depression and Disassociative Identity Disorder. I went through extensive testing several years ago and the diagnosis of Autism Spectrum Disorder and Obsessive Compulsive Disorder were added. So yes! It is complex indeed!

What happens with my C-PTSD is that rather than there being just one trigger or a few triggers, there are many unforeseen triggers. The reaction when triggered is like a reliving of the original experience, whether it was a rape, having my neck broken, being strangled, or being shocked with the stock prod. I feel exactly what I felt when the original trauma happened and it is often incapacitating. If I am in a public place, it can result in quite a scene as I experience what happened all over again. I can taste the blood in my mouth from having been hit across the face with my father’s belt for refusing to lower my pants, just from observing a child about to get a spanking and resisting. I can feel the waves of electric shock go through my body and collapse as silent screams resonate through my mind, from hearing someone mention using a stock prod. It goes on and on because I am not even able to remember all the traumatic events that happened during the seventeen years of living with my “parents”. Often I have to go through several episodes of a recurring memory, reliving it over and over until my adult mind can convince me that it is not going to happen again, that it is over. Then I can have a brief respite until something else triggers a reaction. This is Complex PTSD.

Often I will express myself with poetry while working through a remembered trauma. An interesting observation I have made when looking back at my poetry is that it seems to be written by a child at the level of development I was at when the trauma happened. I attribute this to the raw power the memories had to return me to the actual incident, as though having to go through it all over again.

The following poem was written after my husband suggested getting a stock prod to control a particularly mean buck goat we were having issues with.

The Stock Prod

When I think about the stock prod
I think about the pain
Of never knowing when our dad
Was going to strike again.

He’d often catch us unawares
Or if we turned our backs
He’d jab us from behind and
We just never could relax.

Sound sleep was impossible
With shocks to start the day
It made him laugh to see our fear
To him it was just play.

An instrument of torture
For kids and livestock too
‘Til the animals all trembled
When he stepped into their view.

One day old Babe, the milk cow
Was so consumed with fear
That when he tried to milk her
She just wouldn’t let him near.

She fought and kicked and trembled
In fear of Master Jack
So he picked up a two by four
And broke the milk cow’s back.

She needed a good lesson
Or so our father said
It didn’t teach her anything
‘Cause then the cow was dead.

So then instead of milk to drink
We had half a ton of meat
They ground her up cause she was tough
We kids declined to eat.

And then out came the stock prod
We cleaned our plates up quick
While daddy sat there grinning
As he jabbed his power stick.

So if you think the stock prod
Is a necessary tool
And the goat needs a good lesson,
Can’t we just send him to school?

By Linda Hanson Denmark – 2003

I often communicated with my husband through writing or poetry. Because of my difficulties expressing myself because of my autism, I usually was unsuccessful in explaining things or making a good case for something I felt strongly about. After my husband read this poem, he abandoned the idea of getting a stock prod and agreed to let me sell the offending goat and get a nicer one.

Child abuse when inflicted on any child can cause Complex PTSD if it occurs on multiple occasions. However, the same abuse on a child that has autism, can complicate and increase the difficulties the child already has to face every day for life. All child abuse is wrong. How wonderful for all the autistic children who have loving parents who cherish them and are helping them through all the daily challenges! I hope that in some small way, sharing my story may help even one child. Perhaps even one parent can speak up and protect her child.

Complex PTSD does not go away.

Autism does not go away.

One of these can be prevented.

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Communication

Communication One

They said that communication is words.
Spoken
Written
Ink and vocalizations filled to the brim with
meanings explicit and hidden.
But they mustn’t be laboured.
You mustn’t be slow.
You mustn’t scream.
Wail
Cry
Use your words they said.
But not those words,
and not like that.

Communication Two

They said that communication is about eye-contact.
But not all the time.
There are rules, and they concern;
arbitrarily intermittent durations,
expressions, extents of openness,
frequency of blinking.
Not an exhaustive list.
“You look me in the eyes”
But it hurts.
But then I can’t hear the words
But then I can’t use the words
you told me to use
the way you told me to use them.

Communication Three

Next they said that communication is about
body language.
Gestures that communicate
part of what isn’t spoken
part of what is spoken.
“Why do you do that with your hands?”
“Don’t just point, say something.”
It’s like the words, not like that.
Don’t move like that.
Don’t hit yourself.
Why was hitting me only ever for you?
Why is communication never about understanding?

-INSA
Elizabeth
Its_not_schrodingers_autism

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The Word Smith

The Wordsmith

All I said was
“The fence is touching my van.”
He took those six words,
heated them over fiery coals,
put them on his anvil,
beat them,
reshaped them,
until they weren’t my words at all.
Then he plunged them into icy water
so I couldn’t change them back.

I had only stated an observation,
“The fence is touching my van.”
That’s all.

Linda Hanson Denmark – 2008

 

Communication is very difficult for autistic people, whether they have verbal speech or not. It seems that there are some rules of communication that in my nearly sixty-nine years of learning human speech, I have not yet figured out. The incident above happened when my husband was directing me as I backed up and when I got out of my van, I noticed it was against the barbed wire fence. There was no anger involved on my part. I simply made an observation out loud, which I would have done had he been present or not because I routinely make observations out loud even to myself.

I am still puzzling over what happened and ten years have now passed. Multiply that by the thousands of other times my words have not come out according to the rules of human speech that I do not understand, and it becomes rather obvious why I get overwhelmed with verbal conversation and revert to talking about dogs.

When I was a child, I was able to recite long poems, sing songs, repeat what someone else said the exact way they said it, but I was not able to communicate as expected by adults. I did not and still do not understand the unwritten rules. Perhaps if they were written rules, I could work it out but I doubt even then it would be a natural flow of speech. I think these are rules that babies figure out and naturally learn but apparently for many autistic people, that does not happen.

Eye contact, touch and people noise complicates communication. People like to all talk at once when there is a group. My brain can’t sort it out and I just get totally scrambled signals and have to ask for the person trying to talk to me to repeat what they said. It may appear that I have impaired hearing to the other person, but in reality there is just too much coming in all at once and the overload switch is activated. I may start to jerk uncontrollably and make noises. My response is to want to retreat. Often I will just find a seat and sit down and try to keep my reactions to all the light, noise and people under control. I was even confronted for being a snob because of my “standoffishness”, and because I often left early.

I saw something posted for Autism Awareness month that said “Fight Autism.” Although it is a daily fight for those of us struggling with autism in whatever way our personal struggle affects us, I prefer to think in the sense of “Understand Autism.” If people who do not have the struggles with communication were able to understand the struggles we have, expectations could change. Communication would be a whole lot easier if I did not feel like I am going to fail every time I try to say something because it is misunderstood simply because I don’t know how to communicate the difference between an observation and a complaint.

The fence was touching my van. That’s all.

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Be a Cat!

Be a cat.

Accomodation for still-smouldering rubble:

In the middle of an autistic burnout?
Quiet. Patience.
Acceptance of frequent intermittent
nonverbal periods.
Plan, because my broken brain
screams if it’s asked.
Maybe check that I’ve eaten
because my appetite doesn’t function.
Use the floor-lamp
not the big light.
Leave me alone about not wearing a bra.
Be a cat.

Not in the middle of autistic burnout?
Be a cat.

-INSA

Elizabeth  – its_not_schrodingers-autism

 

Continue reading “Be a Cat!”

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Cherry Blossoms

Photo by Elizabeth aka its_not_schrodingers_autism (Instagram)

I ventured out
into the world this evening.
I found the popcorn cotton candy
trees putting on their annual show.
Their spindly decayed branches
appeared resurrected
in beautiful bright
magenta and pale hues.
As in every year
I hope this happens to me too.
Renewed at the end of hardship
into the bright magenta
and pale hues
of the popcorn cotton candy trees.

Written by contributing author Elizabeth
aka its_not_schrodingers_autism (Instagram)
aka INSA online

See Contributing Authors page for bio.

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Ad Free Blog

Ads are annoying, distracting and ugly. I read somewhere that if I had some ads on my blog it would help generate enough income to pay the costs involved with my website. I tried it for one day.

The ads were supposed to be content related. There was not a single ad that was related to child abuse, autism or art. There were ads telling what foods to avoid if you are overweight and over fifty. I wanted to shout back and tell google that my BMI is in the healthy range. I did shout back. I took the ad codes out so there will be no more ads ever.

I am going to instead put a separate page on this site with some of my paintings that are for sale. If I can sell an average of one painting a month it will cover my costs for this blog. It will be the reader’s option whether they even want to go look at that page. No more ads!

 

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Paper Horses

Read White Rubber Boots before reading Paper Horses

Paper Horses

Sony hovered over the small still form propped up on a pile of pillows on the couch. Sony was playing nurse again. She did that every time anyone was hurt or sick. Somebody gave her a play nurse kit and that just encouraged her all the more. Now she had another patient while Wendy was recovering.

Wendy had been sleeping or dead for two days. I wasn’t much good yet at telling sleeping from dead. Take that rabbit last winter for example.  I thought for sure that when whisker man had skinned it out it was dead. Then it got up and started hopping around the room with no skin on. Whisker man thought it was funny. Sony started crying, mama started yelling and the more they got upset, the harder he laughed.

Whisker man put that rabbit right out in the snow, bare naked with its meat showing. It only had fur on its feet and its head. I was glad when our collie dog caught it and killed it. I was feeling real bad for that poor little rabbit outside with no coat on until I almost felt like I had been skinned naked inside.

So there was Sony now, watching over Wendy, hoping she could make her feel better. Mama wouldn’t let anyone touch Wendy because she would start screaming right away. If she wasn’t propped up she was struggling to breathe. Mama and whisker man were even taking her in their bed at night, propped up between them, to make sure she kept breathing.

Wendy woke up sometimes now, so I knew she wasn’t dead. Mama had washed all the poop and mud off her, but she still looked terrible, all swollen up and ugly colors. It hurt me to look at her but my eyes still wouldn’t cooperate and I kept looking at her until hot tears were running down my cheeks again. She couldn’t move even a little bit without crying and then mama and Sony would start fussing over her and whisker man would start cussing the horses again.

Whisker man had told mama that Wendy had climbed up on the rail fence while he was in the barn milking old Jenny. He said she fell right in amongst the horses and that by the time he got out there, they had trampled her.

I was getting really confused because that wasn’t what I remembered happening. To reassure myself, I looked over where the boots were and sure enough, there were Wendy’s little white boots with mud inside and out and some horse poop on them too. I sure didn’t understand about the horses.

Sometimes I wished I could talk better and ask mama things. I could tell her what I saw if I could use words better. Maybe it wouldn’t help though, because sometimes Sony tried to tell mama things and mama would always say whisker man was right and Sony must be mistaken. So she’d probably tell me that I didn’t see what I saw and then I would be worse confused than I already am. It isn’t that I can’t talk. I just can’t talk like everyone else talks. I can think OK in my head but it doesn’t come out right when I try to talk. Then sometimes whisker man hits me and mama gets upset with me too. It’s better to just be quiet.

Whisker man was cutting paper over by the table and mama was watching over Wendy. I heard her saying “Bad, bad horses! Poor little Wendy! Those bad horses did this to you!”

Whisker man motioned to me “Come over here, Lin. I have something for you.”

He unfolded the paper to reveal a whole chain of paper people holding hands. I felt a glow of happiness as I took the chain of paper people from him. The rest of the world disappeared as I joined the people into a circle so everyone was holding hands all the way around. I could make them dance around and around until I was in a world where there was no whisker man.

”Lin,” and the spell was broken.”Lin, take this over to Wendy,” commanded whisker man.

Before me he unfolded a chain of paper horses, joined tail to tail and nose to nose. I felt that warm glow again as I gently took hold of the chain of paper horses.

Wendy was awake as I stretched out the chain of paper horses for her to see. Her eyes filled with panic as she pushed back into the pillows.

”No, no forshees, no, no, no!” she screamed.

Mama grabbed the paper horses, crumpled them and threw them into the fire.

”No more bad forshees,” said mama. “We won’t let the bad forshees hurt you ever again.”

I noticed about then that whisker man had a satisfied smile on his face as he watched mama and Sony trying to get Wendy settled down again. That confusion was coming over me again. I gathered up my paper people and moved as far away from all of them as I could get in that small house. I joined the hands of my paper people into a circle within which I could escape the confusion as I danced them around and around and around.