Tuesday, April 28, 2015

To the Parents of Newly Diagnosed Autistic Children

When my children were newly diagnosed with Autism, I reacted in a way that I wish I hadn't. Through my heaviest tears though, I looked up at them. They were reading picture books. I was miserable, and they were at happily doing what children do. I was crying, while they waited for me to sit and play. I was a mess, but they seemed just fine.

I could not see my children with tears in my eyes.

They were waiting on me for more than just play. They were waiting for me to stop crying and get back to being mommy. They were loving me despite my mess. I dried my eyes and moved towards acceptance. Without a doubt, it is the best move I have ever made as a parent. So, dry your eyes Mamas and Papas. You've got acceptance to do. It's a lot of work. From one parent of Autistic children to another, I hope this helps.

1. Presume competence in your child.

 Give them every benefit doubt. They are listening even if they cannot speak. They understand. They think. They feel. They are made up of strengths, not the delays written on paper. There will be many people who presume that your child is empty, that your child cannot comprehend, that they are lost, that their input doesn't matter because they are too incompetent to get it. Do not listen. Oppose at every opportunity. Stand by your child even when you are the only one. Believe in your Autistic child. You will never be wrong.

2. Avoid Autism Speaks.

Most quick google searches on Autism lead back to this mega-organization claiming to help Autistic people. The website will frighten you and it should. They despise the Autistic child (and adult). Autism Speaks uses language like missing, burden, and tragedy, to describe the one you love with everything you've got. They forecast the failure of your marriage. Claim you aren't really living. Take money from good people, never returning it to the Autistic individuals needing help. There are many more reasons to avoid Autism Speaks, but don't you let them talk about your child that way. Don't let them scare you.

3. Find Autistic adults.

There are loads books and online information about Autism that has been written by Autistic people themselves. I will include some links at the bottom to get you started. Read these instead of things written by non-Autistic "experts". The information you receive will be firsthand, and far more accurate and powerful than any other resource available. Most misconceptions about Autism are immediately cleared up through their personal accounts. They will help you connect with and support your child authentically. Help you understand. No one knows better about Autism than Autistic people. Listen, listen, listen.

4. Stay away from pity parties.

There are many within the Autism community that like to bemoan the life they have been given in receiving an Autistic child. Of course we parents have an adjustment period, where we must learn to accept our children's disability. However, we do not have to get stuck in the trap of self-pity. This wallowing serves to harm our children. Falling into a false support system, one that makes you feel miserable, not empowered, not enlightened, impedes the process of acceptance. Your child needs your acceptance more than anything else. Seek positivity and love in your support systems.

5. Unpack your own issues.

Though you may not have anticipated your parenthood unfolding in this way, your beliefs and feelings about disability are consequential to your child and family. Our society is deeply ableist, and consistently devalues the disabled person's life. Consider the prejudice and privilege you hold. Are you afraid of the future? You know now how little society cares. Are you ashamed? It's not shameful to be as you were made. Did you dream of the perfect child? Well, your perfect child is Autistic. Work through your problems before they hinder your child and family.

6. Be wary of all therapies and interventions.

Your child will most definitely need support, but there are many services called "therapy" that are anything but therapeutic. If your child cries, has a meltdown, or says "no" with words and or actions, this is a strong signal that something is wrong. If a therapist disregards your child's "no", does not presume them to be competent, or seeks to control their behavior as opposed to understanding it, do not hesitate in pulling them. Autistic children need to feel safe, not stressed. Most "therapies" are based on your child's "deficits". Support is boosting their strengths.

7. There is no Autism epidemic.

Our best science and research points to Autism being a genetic variance. The "rise in numbers" has been directly linked to our increased understanding of Autistic characteristics in young children. There is an all too recent history of institutionalization of the disabled, where many Autistic individuals were hidden from society. Others escaped such horrific fates, but learned to pass at the great cost of their mental, emotional, and physical health. The Autistic adults for 1 in 68 can be found in our families, neighborhoods, work places, and parents often come to recognize Autistic traits within themselves.

8. Neurodiversity is diversity.

The differences in our brains must be the most spectacular diversity of all. Your child might not think like the majority do and that is something that ought to be appreciated, not deemed unacceptable. No great thinker resides in a box. The Autistic life has it's challenges, but our children are sensitive and thoughtful. Some have gifts of intelligence. Some have the will and perseverance of earth shakers. Some see the colors of music. Some have none of these things, though all experiences and expressions of life are valid and worthy of celebration as part of our natural human diversity. Study Autism through the lens of Neurodiversity.

9. There is no cure.

There never will be. We cannot "cure" a neurological divergence and really that's not even the point. Autistic people, by and large, do not want to be cured. They want love and acceptance. They want to live in a world that doesn't want to erase their identity. We are taking about brains, which shape our beings, not limbs to be cut off. To Autistic people, a "cure" means they cease to exist. This is perfectly reasonable considering that much of the "cure" research is aimed at developing a genetic marker that would give mothers the opportunity to terminate pregnancy, or prevent Autistic life. It's a hoax, it's a slippery slope, and the hunt for a "cure" will never help your living, breathing, child.

10. It's going to be okay.

You are going to figure it out. You and your Autistic child, together. The stress will lessen, the communication will grow, the answers will come. It won't be easy. Parenting never is, however, you haven't learned how strong you are yet. Your child hasn't had time to shine. Give 'em a minute. Give yourself a minute. In fact, you have a lifetime. Focus on love, and each chance you get to make a decision in that direction, do. Love it through.

Some helpful resources written by Autistic adults:

Kim at Eccentricities and Introspection.

Patricia at Echoes of Mermaids.

Emma at Emma's Hope Book.

Morénike  at Just Being Me...Who Needs "Normalcy" Anyway?.

Landon at thAutcast. His book "I Love Being My Own Autistic Self".

Cynthia at Musings of an Aspie. Her books,  I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults and Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life


Ibby at Tiny Grace Notes (Ask an Autistic) and NeuroQueer.  
Amy at Non-Speaking Autistic Speaking.


Kassiane at Radical Neurodivergence Speaking.

S.R. Salas.

Sparrow at Unstrange Mind. Her book No You Don't: Essays from an Unstrange Mind.

Lei at We Always Liked Picasso Anyway.

Alyssa at Yes, That Too.

Additional resources for parental support:

Parenting Autistic Children with Love and Acceptance.

Respectfully Connected.  

Monday, April 27, 2015

Autism, Lies and Devastation

After writing my last post, related to an advertisement for an Autism awareness event in my area which claimed my children were devastating, I wrote a letter to the editor of the paper that published the add. I wrote it well. I was polite but firm, no my children are not a devastation, and no this brand of "awareness" was not helpful. The letter did not get published. I was not surprised. This morning I received a comment on another previous post of mine, so I went back and re-read what I had written there about parental blame. In that post, I used the word devastated to describe my state of mind upon realizing my children were Autistic. I used the word devastated myself.

I will tell my why and maybe some mother down the road will find a better way.

Probably the same day I filled out the MCHAT, I called a loved one sobbing. I asked her if she could talk, and then it all burst out. I told her about Ty. That he had all the red flags. Things were a blur, but I specifically remember being devastated about the myth that Autistics lack empathy. Of course then, I believed it was true, that my child was incapable of feeling, of connecting, of having the heart it takes to empathize with another life. That broke me. I thought my child would never feel, and I could not imagine how I, the empath, the one guided by heart, the one who feels her way through life, had a child so different from me.

The lie of Autism and lack of empathy left me devastated.

When the boys were six months old, they were given the wrong vaccine. To be clear, this was not a vaccine that has been (falsely) associated with Autism. In fact, it was actually a smaller booster of the shot they were supposed to receive, and harmless, other than we had to give the original shot again a month later. When this happened, I went into a fit of anger and asked for the nurse's head, but no damages had occurred. There was little I could do. My ignorance of vaccines and Autism, combined with this mistake, kept this incident in my mind as I watched my boys grow. Sure enough, Autism. I was so angry at that woman. So angry with myself for allowing a stranger to inject my child with what ever it was that made my baby Autistic.

The lie that Autism is a vaccine injury left me devastated.

Getting back to the post where I originally described myself as devastated, the specific quote:
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.
Again, I believed what I was told. I thought that I had exposed my children to chemicals that caused them to be Autistic. It was something I did. They never left my side so it had to be me. Something I ate during pregnancy? Maybe it was because I had thrown up so many of my prenatal vitamins? Maybe it was the sunscreen that I generously applied thinking it would protect them? What ever it was, I did this. It was my fault.

The lie that Autism is caused by our environment devastated me.

It was devastating to get kicked out of the public library because my Autistic children were "disruptive" to the sanctity that is story time.

It was devastating to be told that my children needed 40 hours a week of therapy and that I was good not enough to help them.

It was devastating to have strangers glaring at us in the parking lot in our most vulnerable moments.

It was devastating to watch my children meltdown in protest while therapists pushed their bodies along as if it was good for them.

It was devastating to hear another therapist joke about putting vinegar in a child's mouth as if Autistics do not have a history of these abusive "treatments".

It was devastating to receive an on the spot diagnosis from a Developmental Pediatrician milking the system.

And to realize that my pain and sadness was because everyone else is lying about Autism, it devastates me still.
That is my why. That's the truth.

It's no wonder my paper didn't publish my letter. They have no reason to believe me and every reason to believe the lies that devastated me. No one opposes. But, I do and I will.

This morning I wrote the above. I am coming back to tell more this afternoon. The paper called. My letter will be published tomorrow. I have hope.

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". raisingrebelsouls@blogspot.com

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.