Thursday, April 23, 2015

Not Your Autism Devastation Story

"Every 20 seconds a family is given the devastating news that their child has Autism."

This morning I opened my local newspaper to find the above statement in an advertisement for an "Autism Awareness" event. The fundraiser is being hosted by two non-profits in our community, one of which has the words "Autism cure" in it's name. While people will come out to play games and walk in circles for the devastation that is my family, I find the pity party itself to be mightily discouraging. This is where my children have to live. We walk down the street in a city that cannot comprehend human dignity and that portraying someone as an annihilation is wrong. It's so close, it is home. Not us though. Nope. We are not your Autism devastation story.

When my first child was diagnosed with Autism, I probably could have described my state of being as devastated. I was certainly afraid, definitely sad, and I'll explain why. I felt pain because I was taught to do so. Not only was I taught to fear disability, but I accepted that script for true. Society, from our streets to the Eiffel Tower, instructs us to dread the Autistic child. Claims of epidemic, descriptors like devastating, spreading lies about "cures" just as diseases themselves spread, these things hurt my Autistic children. They hurt all Autistic people. That negative mentality hurt me as a parent too. Every time someone promotes the idea that Autism is a tragedy, mothers like I once was, are lead to pain.

How we as a society welcome or exclude diversity, and disability is absolutely part of our natural diversity, reflects our own limitations. Pitying my children might come easily because that is what we have been taught to do, but it doesn't dissolve our personal responsibility to treat others with compassion. I feel sorry in reverse. It's a shame that Autistic people are not welcomed. It's a shame on us. My children are offered segregated educations, therapies which demean them as robots to be programed, and pity parties disguised as "awareness" campaigns. They deserve inclusion, support, and respect.

If the hosts of this event truly wish to help, they should not characterize the very people they claim to serve in this manner. Good intentions and a good cause do not make degradation permissible. Unfortunately, they are following the lead of many larger organizations who also use fear and tragedy rhetoric to collect funds. Though the money gained in this event appears to be going to a relatively decent cause, the "help" is backhanded. We do not need our communities to feel sorry for us. We need our communities to accept Autistic children and adults because they are citizens, because they have something to contribute, and because they are valuable human beings. Everyone is valuable.

Once I was able to refuse the devastation script for how our lives should go, things weren't frightening or sad any more. My children and I were able to bond on a level that had been inhibited by my fears. I learned to look at their strengths instead of deficits. I realized that they needed support, not to be forced into conformity. They have done nothing but thrive. That is our story. It is hard, I won't deny. Raising Autistic children is hard. It's hard to know that those in my neighborhood think nothing of putting us down. They call it "help" when they call us devastating. It's hard because all good parenting is hard. We rise to the occasion of our children though.

My children, my family; we are not your Autism devastation story.

Image Description: A photo of two children mesmerized by, and kneeling behind, rainbow colored pinwheels. The text reads "Love Neurodiversity".

Wednesday, April 22, 2015

Parental Blame and Autism

The history of Autism is ripe with parental blame. Most people have heard the term "refrigerator mother". Though the label has diminished, the damage lingers on. Autistics who were children in the era of the "refrigerator mother" were often recommended for institutionalization. Parents were shamed into submission because after all, it was their fault. The family was infiltrated, damned, and divided. The repercussions are still being lived by those struck down with the false belief that a cold hearted and unaffectionate mother provokes Autism within a child. The damage lingers but so does the sentiment. Parents are still blamed as the reason their children are Autistic.

It is safe to determine that a good portion of those behind parental blame are from the cure-subculture within the larger Autism community. These people believe that Autism is something separate from the child. They divide the Autistic child into "child with Autism" as if Autism is simply attached, secondary, removable, curable. The child is supposedly exposed, injured, or something happens that makes them "have Autism". They catch Autism, like a disease. Plastics, vaccines, Monsanto, living near a freeway, the "causes" of Autism change daily. The implications of this belief system lead ultimately back to parental blame because the parent must have (at least) allowed the child to be contaminated.

I was quickly slammed with this kind of blaming upon entrance to the Autism community. A photo on a website showed a child in the same stroller that I used with my children. A second photo showed a toddler chewing on a baby gate familiar to me. Another with a child drinking from a bottle that I recognized. The words alongside crushed. Mothers! Stop subjecting your child to these poisons! Hold your baby instead of putting them in a stroller made with synthetic materials! I could not always hold my two babies at once. Something I already felt horrid guilt about, as do many mothers of twins. Stop using plastics! As if I could keep my extremely active children safe with out the aid of plastic baby saucers, highchairs and gates. Stop feeding your babies toxic formula in toxic bottles! The shame of not producing enough milk for two. I was devastated.

The frightening part is that too many parents accept blame. They conclude that it was their failure as a parent. They should of opted out of vaccinations. They should have gone organic. They should have protected perfect baby from becoming Autistic child. Moves made after this conclusion is drawn, are limited to dangerous ones. Mother guilt will motivate. Attempting to remedy the guilt, the child must be cured. Must be detoxified with chelation and bleach enemas. Must be fed strange and expensive diets and supplements that quacks recommend. Must be trained to act normal in the meanwhile. The child must be diseased, injured, and damaged. More, these parents turn around and blame the next round of coming in. It's a sick cycle.

Fortunate for me, I've been mostly able to work past that burden of blame placed on me as a parent to Autistic children. I didn't let the shame close in on me so tight that my only option was to go to war with my children's insides. I shudder to think. Imagining our parent-child relationships with out love and acceptance is nothing but nightmare. It didn't happen that way. I remind myself but it still heavy and that's the part of the blame game that never goes away. I understand what I might of missed out on. I recognize how easily it could have gone the other way. I know there are parents out there hurting themselves and hurting their children too. My burden is that knowing better, I must actively push this stereotype into the past. We must.

Yes, parents are still being damned as the cause of our children being Autistic, and yes, we are shaming each other, but no, this is not the era of the "refrigerator mother". I was lead to love and acceptance, which reveals time's change. I believe we are parenting Autistic children in a turning point. We have the science to prove that Autism is genetic, and thanks to technology mixed with sheer determination, Autistic adults are gathering to teach us about Autism from the inside.  A mother of Autistic children like me can rebel against parental blame, finding refuge in the firsthand. It's a historic time, where Autistic culture is blooming beyond the shadow of institutionalization and buried identity, leading us all to understanding. I bear witness.

We do nothing to cause our children's Autistic neurology beyond combining and sharing our own intrinsic traits. Rest assured here. Then keep pushing past parental blame.

The following clip is related to "refrigerator moms" though not my message above. I cannot recommend the full film as I have not viewed it, however, the segment shows another important element of the time period. Mainly, how black mothers and their Autistic children were (are) discriminated against on deeper levels.

Tuesday, April 21, 2015

My River

When I was young, a wonderfully nuclear family took me in most days. The father was a pastor. The mother stayed at home to raise the three children. The oldest daughter was my best friend. Then there was her slightly younger sister and tag along little brother. I was a terrible influence, growing up contrary, exposed to too much too soon, bold as a means of self defense. This family loved me anyway. They always took me to church on Sunday, but once, they took me to the river.

Life was getting the sisters to take their clothes off. I let them in on skinny dipping. It was perfectly reasonable given a setting so lush. We threw our bathing suits up shore and caution to the wind. The green tint of the water, the way it touched and moved around our bodies, the freedom of crossing the line, everything was a giggle. When little brother ran away with our abandoned suits, laughter became breathing. Oh my god, it was good to be in the river naked.

Death was waiting. The next morning a livelier piece of river entertained us, acting as our glorious, natural water slide. We rode the wildness that it was, then climbed back along the banks to do it again and again. I got caught up, first in a twist of the currents, and then in a tangle of tree roots. My breath became trapped in bubbles. My hair fluid. I struggled. I recognized death, and it is true, all the stories of life well up within. I ripped off my goddamned bathing suit just in time.

Another once, I did not bow when the congregation prayed in unison. I looked at the pews of people instead. They were good, they cared for me and each other, they sang and danced and played beautiful instruments. But, they believed in God. It was unimaginable. I couldn't believe. Couldn't they tell it was all a grand story? Wasn't it preposterous in the context of our present day lives? Why had they tricked themselves? I did bow then, my young head wondering.

The River I could understand.

Thursday, April 16, 2015

#AutismAwareness Sucks

Did I get your attention? Hopefully. Does Autism awareness really suck? Yes. It really sucks. Am I a terrible person who doesn't care about Autistic people? Nothing could be further from the truth. Let me explain.

The most striking feature of the Autism awareness campaign is the color; blue. Everybody knows "light it up blue" from the Empire State Building to Kingdom Tower in Saudi Arabia, though I challenge the world to know more. Blue is a fine color, however, the use of blue, "light it up blue", and the blue puzzle piece, are the work of the notoriously unethical organization; Autism Speaks. It's merely a grand advertisement scheme for the company that is exploiting Autism for profit. Blue is their brand. You better believe they are collecting cash in these promotional stunts too. Autism awareness is a soliciting tool. 96 cents on a dollar fuels the money making machine that is Autism Speaks. Autistic people and their families get a shiny four pennies of that, and only if they sell their soul first.

Beyond the unscrupulous syphoning of funds, Autism Speaks in no way should be educating the general public about Autism. The kind of information they are spreading is not only erroneous but harmful. Describing Autism as a disease to be cured, as a tragedy, a burden, a national crisis, creates negativity and hostility in the life of each Autistic person. Suzanne Wright, co-founder of the organization exemplifies these dangerous acts against Autistics each time she opens her mouth to speak. She has, over and over again, used stigmatizing language to describe Autism, Autistic individuals, and their families. Her voice, one of the loudest and tragically one of the most influential, has been used to do nothing but inspire fear of Autism within the general public and silence the actual Autistic community. Autism Speaks might have well called it "Autism beware-ness month".

The month of April has been dedicated to Autism and yet the awareness attack lead by Autism Speaks obstructs the message that Autistic people themselves would like to make known. They reject awareness. They testify that blue lights have helped them none. They tell us they don't want to be cured or represented by a puzzle piece. They describe the beauty of being Autistic. They make clear that the hardest parts of their lives are a result of the maltreatment they receive. They insist on love, acceptance, and inclusion. They hope that this time of year will eventually become reason to celebrate their kind, instead of supporting the organization which demeans them. They explain; Autism Speaks does not speak for them.

The branding, the money, the power of Autism Speaks and the way they have dominated the conversation during this time of year, makes Autism awareness a gimmick. A cover up.  A publicity stunt. A self-promotion for the Autism monopoly. An imbalance and injustice against Autistic people.

Autism Speaks sucks. So does their "Autism awareness" plot.

My Autistic children, my Autistic family and friends, I too insist on love, acceptance, and inclusion. I am celebrating you. You deserve April, and every day. You deserve better.

Image of an orange kitten with a very serious look in his eyes. Text at the top reads: Words Autism Speaks uses about his Autistic family: Missing, gravely ill, not living, in despair and fear, depleted mentally, physically, and emotionally, monumental health crisis, national emergency. Pumpkin gives the evil eye to Suzanne. #BoycottAutismSpeaks

Tuesday, April 14, 2015

My Color

It was raining when her headlights reversed and then turned away. Maybe that is why the darkened preschool went unnoticed. Everything had taken on the shade of the clouds. Even the grass was gray. Mother did not want to get gray on her. No matter. I traveled up the swooping sidewalk alone.

The door was open. Nothing else was the same. Inside should have been busy and bright with primary colors. Small children and teachers should have been making bold movements across the room. A spectrum of sounds should have filled all negative space. It was dim, deserted, and silent. An empty school is a strange scene. I settled myself with the thought that I must have arrived early.

Teachers never had time for watercolors. There were trays of rainbow stacked behind white kitchen cabinet doors. I gathered a glass of water, paper, and brushes. Without finding a light switch, I carried my goods to the far end of the classroom. A beam from a lamppost out back shined through the sliding glass door. I crawled under the table because that is where the lone light decided to cast.

My choice was purple. It matched the dark of everything around me. It competed with the somber mood of the morning. It transcended the gray. Purple rings spiraled from my paintbrush. Imperfect circles, like sagging automobile tires. Accents of blue and green made their way onto the paper merely because the fullness of purple overflowed onto their neat little ovals. Page after page, I painted.

An interruption arrived. Another mother walked up the sidewalk with her child. She read the note left behind. The children and teachers had all gone to the circus. They were in the place of red and white stripes, where turquoise sequins dazzled and yellow tassels dangled off the bodies of tricksters. We loaded into that mother's sky blue hatchback and hurried to catch up, but the circus had not waited. It never does.

Alone slipped into lonely. What a silly thought that I had been early. What a ridiculous idea that painting color was my good fortune, while my classmates experienced color and light and each other through the authenticity of adventure. What a joyless realization that I had been left behind. I recoiled into purple. My color came to be.

Tuesday, April 7, 2015

My Hands

The following is the first in a series I am writing titled My World. Some of these are intimate and well kept stories from my life. Some are lighthearted. Some poetry. Some prose. Mostly, these are the words of my beautiful mess.

My Hands

Manicured with the stain of mulberries.
Or the green husks of black walnuts.
Or plain dirt.

My hands.

My hands

Revealed silver from ancient rusty cans found in the barn.
Dipped seashells into the liquid sterling.
Dunked worn books.
And pieces of twine.
And tools unused for decades.
And anything.

My hands soaked the world in glimmer.

My eyes took that beauty,
from the paint,
from the illuminated forms of simple objects,
from the evening sun desperately trying to compete with his golden colors.

I took that.
I hold on still.

The glitter is lodged under my finger nails.

My hands

Played with parched minerals mined of the Earth.
United them with their mate, the other gift, Water.
Created body.
Made clay.

And the clay made me over.

I was worth something then.
Hard working.
Even loveable.

I had forgotten that was a possibility.

I made something out of dust.
Dust made something out of me.

My hands reminded me that I am Earth and Water.

My goodness.

I keep on to it.

Find it in the crevices of my palms.

My hands

Held the stems of clover flowers collected under the cover of childhood.
Held monkey bars undeterred by blisters.
Held my jacket closed when the zipper broke.
Held the handle of a red wagon full of my best friend.
Held thorns tightly under skin.
Held the turquoise gemmed key to my father's heart before it was lost.
Held a paintbrush dipped in purple when I was left alone.
Held ink from a piercing calligraphy pen.
Held the scissors of suicide.
Held a brick burning a thousand degrees.
Held wrinkled paper maps with their folds disappearing into fibers.
Held the wheel across this astonishing nation.
Held the hands of hundreds of children.
Held books with pictures for their eyes and minds.
Held up my breasts, aching with milk.
Held my own babies.
Held my world together.

My Hands, please, hold my world together.

They will.

I won't let go.

Friday, March 13, 2015

Out Love Hate

Image of a fence with horizontal planks and green foliage peeking over the top. Painted on the fence are the words:
"Out love hate" Stamped with

Thursday, March 12, 2015

On Autism, Vaccines, and Love in my Activism

A while back, I made a bold declaration of my thoughts about Autism and vaccines on my Facebook page. I asked all those opposed to vaccinating their children because they believed it would cause them to be Autistic, to unfriend and block me. I did not expect to lose anyone of significance in my life, but I did. This was more than losing a casual Facebook friend. A friend that I have held close for twenty years, disappeared. It was crushing to find him gone.

I would like to begin with giving my friend every benefit of the doubt. His journey as a parent has taken him to lows I hope to never know. Giving the littlest information I can, his first child had a terminal condition and lived a very short, painful, life. There is no one I can imagine that could have handled these circumstances with more strength and grace. He is a beautiful father. He is love.

In contrast, my journey started with two healthy babies. I had quite a while of parenting without major concern. It was hard with two infants, it was different than the experiences of other parents because they were twins, but it was relatively "normal". Then of course that time comes where the Autistic child begins to stand out. Ty was a step behind. It became obvious that he was Autistic.

Here's the part that I am ashamed to tell. I grieved. What I mean is, I related to my friend in a way I shouldn't have. I compared myself to him. I believed the fear and tragedy story of Autism. I believed my child was sick and destined to suffer. I felt like I had lost my child. I fucking felt like I did when someone I loved died. My face gets red hot knowing I am going to have to settle up with my children about that someday. I am ashamed to tell but I did that.

While I was privileged to be pulled out of that place of despair, my loss was only a figment. My friend's was not. While my ableism allowed me to grieve, I walked out of that grief with my children. My friend did not. While I am here fighting for my Autistic children's acceptance, my friend's child is no longer here, and never will be here, and no matter if he takes on the world too, he has to accept that.

A year or more ago I learned that my friend was suspicious of vaccines and believed that they were possibly related to the medical condition his child had. I made it clear that despite ideas about vaccines being dangerous, my Autistic children needed to be kept out of the matter. I tried to explain that my children should not be held up as a tool of fear, that there was no scientific evidence to support a link between Autism and vaccines, that this was a matter of civil injustice.

Yes, I mistakenly related to my friend in my grief, and I think that maybe my friend has mistakenly related to me too. My children are not sick. They aren't suffering. They aren't lost. We have both had our ups and downs, but never should my friend nor I, relate his experience as a father losing his child, to my experience raising Autistic children. Never. We are not the same. Not that way.

Part of me was crushed because I know this is all a big mistake. Vaccines do not cause Autism. Autism is genetic, just as I so boldly declared. But, the medicalization of Autism contradicts these truths. If a person believes my children are sick, something made them sick. That person can then find plenty of anecdotal accounts from misguided parents and "professionals" to back up that belief. The myth that vaccines cause Autism, and the lie that Autism is medical disorder go hand in hand. They give credence to one another.

Part of me was crushed to find him gone because I made mistakes. I could have had more compassion for his journey. I could have chosen different words. I could have left out the ultimatum and asked for conversation. I could have gone to him and tried to listen as hard as I tried to explain. Maybe my friend, with all the hype and his deserved fears, could not risk having another sick child. For sure, I cannot risk letting people believe that my children are sick. But, I could have been love.

My friend, I am sorry I was not.