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?
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.
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.
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
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!
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.
White Rubber Boots – Part of an artistic installation by Wendy Hanson Hoffman
I leaned tightly into the corral post, trying to be as still as possible without being noticed. I knew Wendy was going to get it. The red whiskered man had told her to stay out of the puddles. There she was, with mud right up over the top of her boots and running down the insides, her pudgy little arms sticking too far out of last years sweater. She was just singing to the sunshine and enjoying the sweet pleasures of a muddy puddle on a warm spring day.
I listened toward the barn for the singing sound of the milk going into the bucket. As long as he was still milking old Jenny, Wendy still had some time to get out of her predicament. She seemed oblivious to the dangers though, and was now reaching into the mud up to her little elbows trying to get one of her boots unstuck. Nice new white rubber boots. Boy was he gonna be mad!
All at the same time, it seemed, the milking sounds stopped and Wendy plunked down on her butt in the mud and started wailing. I grabbed onto my post even tighter and held my breath.
”Stupid little Wurpet! I told you to stay out of the mud.”
Whisker man wasted no time getting from the barn door to the mud puddle, cussing and yelling at Wendy all the way. She wailed even louder as she tried to get up and fell back in the mud again. He yanked her up by an arm and raised her high above his head, then flung her to the ground, right into a pile of horse poop. He commenced to kicking her with his big boots, just kicking and kicking until it really started to bother me that he was getting horse poop all over her, even in her hair. She had stopped crying and wasn’t even wiggling now. As far as I could tell, she wasn’t breathing either. She must be dead.
I hung onto my post and tried to get my eyes to shut but they just wouldn’t cooperate. I just wanted him to stop kicking her and getting more poop on her. I tried not to make a sound.
Then, as suddenly as he had started, whisker man stopped kicking her and picked up her limp little body, cradling it as though she was his precious baby and something terrible had just happened to her.
”It was the horses,” he was saying, as he headed for the house with his precious cargo, yelling for mama and cussing the horses, using all kinds of bad words my ears didn’t like to hear.
I glanced around to see where the horses were. They were grazing peacefully on the far side of the pasture. I stood there, still clinging to the post and trying to make sense of it all, while hot, silent tears streamed down my cheeks.
”That was real dumb on Wendy’s part,” I thought. “Real dumb!”
You could never tell what was going to get you in trouble with whisker man, but she should have known to listen to him when he said to stay out of the mud puddles. Now last week, when I got a good punching, that was different. I was still figuring on that one.
Whisker man had been driving down the lane in his pickup truck, me riding alongside of him, standing up so I could see out the window since I was a little small for a five year old. All of a sudden a bunch of sheep ran into the road in front of the truck. He hit the brakes hard and my head hit the windshield hard. A big crack went all the way across -the windshield- not my head, though my head wasn’t feeling too good right then either.
He stopped the truck and grabbed me before I even got the first sound out, punching me and cussing at me for busting the windshield.
Well, I’d sure try never to do that again, though I wasn’t exactly sure what it was that I did that I should never do again. Life is hard like that sometimes. Just so hard to make sense of things.
Epilogue
The accuracy of this memory has been verified in two ways. While my sister was undergoing unexplained rib problems and attributing it to something whisker man called “rabbit punches”, she was also working on a sculpture exhibit, which was based on white rubber boots. We lived thousands of miles apart and this was nearly thirty years ago, so we communicated by snail mail. When I shared with her the memory I had upon which I wrote the above story, she went for xrays and sure enough, had several unexplained healed broken ribs.
The rabbit punches happened to whomever was allowed to sit by whisker man in the truck. He chose. While driving along, without any warning he would suddenly elbow the child beside him in the ribs. Hard! It was similar to the hot spoon torture. You did not have to do anything to deserve it. Just be there!
The second way the memory was verified was when I told our mother about it. She remembered the horse having trampled Wendy and that they had to keep Wendy sitting up even at night because she couldn’t breathe lying down. They did not take Wendy to the doctor.
I am unable to explain this incident except to say that abuse does not just affect the child it happens to. It also affects the children who see what happens. I was unable to tell my mother what I saw and did not completely understand what happened. I could not comprehend dishonesty. The communication difficulties of autism along with being easily overwhelmed made it extra hard to make any sense of these happenings. My response was to retreat into my own safe world.
Cracking rocks as a small child, hour after hour, making piles and piles of cracked rocks, was a wonderful way to spend my days as a small child. I saw inside the rocks amazing patterns and designs that lit up my little heart. The same was true of my visits to the creek to watch the ripples on the water. I would toss a pebble and watch the ripples, then toss another and watch what happened when the second ripples bumped into the first ripples. Shadows also fascinated me, as did droplets of light coming through the trees, patterns of berry bushes loaded with berries, patterns made by pebbles in the creek bed, patterns in a dried up puddle and so many, many, beautiful patterns everywhere. I could happily spend my days watching and absorbing these things.
Recently I was messaging my sister in Colorado who has a BA in Fine Arts from the University of Lethbridge. I asked her if she felt I am out of balance after another family member criticized me to what I felt was an excessive degree. My sister told me to disregard the criticism and to keep painting. She understood my fascination with patterns because she grew up alongside me. She even was moved by one painting that reminded her of excursions we used to take into the forest to where there was a tiny cabin. The painting is the one on the upper right above. She could even feel how the sunlight filtered down through the trees.
My recent artwork has been an explosion of patterns, colors and shadows. I did them on 12 x 12 canvases and just hung them sitting loose on the screw so that I can lift any painting down and sit and enjoy the patterns and colors. It was suggested by a well meaning family member that I am out of balance, making too many meaningless paintings. It was pointed out to me that the cost of paint and canvases for filling my walls with these paintings was out of balance considering that my refrigerator was empty.
So am I the proverbial starving artist? I think not. I am the senior on social security who gets income only once a month, pays the bills and runs out before the next months deposit day. That’s all. I justify money spent on art supplies as a substitute for anxiety meds. If painting and looking at patterns and colors is calming to me and I do not need prescription meds at all, how is the cost of my art supplies even a concern. I also choose not to drive anymore and have no car expenses. I am badly affected by fluorescent lighting, noise levels and crowds, so I don’t go out to eat, go on cruises, or take trips. My preferred outing is a walk down to the river to observe patterns, colors and shadows.
Do I have too many paintings of patterns? Perhaps by some standards. However, I live with four dogs and two cats and they have never complained. My grandchildren are my most regular visitors and they love my paintings and make plenty of their own. I have a whole wall just for them.
Recently I hung a new painting in one of my displays and took down one to make room for the new one. My three year old grandson immediately noticed the missing painting and asked what I had done with the “fire” painting that he really loved. I explained that I wanted to hang up the new one, which he said he liked as well. He went through my house looking for another spot to hang the “fire” painting and showed me where I could put it by the coffee maker. I did. He said “Now every time I go in your kitchen I will be happy!”
These are some of my displays. I have twenty of the pattern paintings in my living room.
This is a slightly different post than my poetry and childhood history posts. I want to use this website as a means of helping others, both on the spectrum and off, to see inside the mind of a person with autism. Every person on the autism spectrum is different, yet there are so many similarities that when I look at the art of many artists who have ASD, I understand and feel their art.
The tree,
deformed and
scarred by life,
did not choose the ground
where it would grow.
The tree,
whose seed was put there
or fell there
in that barren, rocky place,
was forced to struggle.
The tree,
branches at odd angles
like arms pleading help,
was alienated amongst
buildings and concrete.
The tree,
arching backward,
peeled back its skin,
exposing the black cavity
within its twisted trunk.
The tree,
a monument
to the will to survive,
stands graceful
in its death.
By Linda Hanson – 2001
I sketched this tree and wrote this poem while sitting in a parking area in front of an arts center waiting for my daughters to finish a class. Often I am unable to tolerate being inside a building for more than a very short time because of my reaction to fluorescent lighting. Not only do I jerk and make noises when exposed to fluorescent lighting, but the sound of the lighting is often overbearing. Fluorescent lights have an effect on my brain that takes hours to recover from if the exposure is more than a few minutes. So I try to minimize exposure and spend lots of time waiting outside. If I have paper and a pen, waiting outside is not difficult at all because I can enjoy the clean air and whatever there is to see, even if it is a dead tree.
Although I had not yet been diagnosed with autism at the time I wrote this poem, I had been living with it my entire life. Much like the tree, I did not choose my circumstances in life. I could only make the best of the circumstances I was born into, even when it was a struggle.
Screams inside me
screams of horror,
depths not searched
where total horror
holds a captive
still in tears
held hostage more
than fifty years.
By Linda Hanson Denmark – 2003
Children with autism often have difficulty communicating so in effect, if there is no one looking out for their well being, they are in a hostage situation. The effects can last a lifetime. It doesn’t end when it ends.
