Fuck you, Autism.

This blog post comes with a strong language advisory.
I’ve been mulling over a few blog posts lately.  What to write, oh what to write…..?
I would start things….but not finish.  I would have great ideas, but no way to wrap it up neatly.
This was bugging me.

Then the other day, Serafina, (Jack’s biological sister- same mom, different dad, and the daughter of my heart) was showing me her photo keepsake album.  There were pictures of her as a small child, of her family in the south, and of her as a gangly teenager.  It was delightful.

Then she showed me a picture of Jack as a baby.
Now, I have seen pictures of Jack as a baby before, so it wasn’t a complete shock.
As a matter of fact, there is a picture of him on our fridge sitting in a high chair with a huge grin on his face.

But this picture was different.  It showed a very composed, calm child with a look of peace in his face.  I was moved by the colors, the composition, and the expression on his face.

It was THIS picture:
photo (96)

Just look at him.
LOOK.
What do YOU see?

I see a blank canvas upon which a masterpiece could be painted.  A masterpiece painted with brushstrokes of love, devotion, and courage.
This little guy looks like he could write the next great American novel, pitch a perfect baseball game, find the cure to cancer, forge new paths, be the guy everyone calls to help them move cause he’s just nice like that, and so much more.

Instead: Autism came along and graffitied the hell outta this piece of art.
It wasn’t gentle– like say you get your painting and you are thinking: “wait.  is that ECRU?  I thought it would be more beige.”
No.
This was vandalism at its worse.
It completely and forever changed this work of art into something unrecognizable.

And for that I say:
FUCK YOU AUTISM.  Fuck you and the horse you rode in on.

Damn you to hell for stealing the future and possibilities from this child.
And that goes double to YOU, too Tuberous Sclerosis.
Where the hell do you get off sticking tumors into this kids brain or causing seizures and brain damage?!

Fuck you and all that you stand for.

So what are we left with?
A child –someday a man– whose future is uncertain.
Who will never live on his own.

Who will always be childlike.
Who will always need care.
Who will ALWAYS have tumors in his brain and always have to contend with seizures.

Make no doubt about it. Jackson is no Thomas Kincaid painting. Perfect and safe.  Mainstream.
Jackson is not  paint by numbers .  He defies realism and a conventional palette.

He is cubism.  He is a Dali. He is a Pollock.   He is a changed canvas that challenges YOU to come to terms with what you see and what you perceive as beautiful.  He is art as a verb.

He is the Venus de Milo– still beautiful if not what the artist originally intended.

And listen, I may not know much about art.
But I know what I like.

And Jack is– and will always be — a thing of beauty to me.

 

So here’s to us– the  curators of outsider art– or autism parents.
We see the world differently.
We have to.

Ours is a world of obsessions, aggressions, headbanging, stimming, and sensory overload.
We have found beauty in the unique, in the small victories, and in a moment of true eye contact.
We would give the world for our children, and still we say:
Fuck you, Autism.

 

 

photo (97)

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33 thoughts on “Fuck you, Autism.

  1. Powerful feelings lead to powerful words sometimes. I am touched by your writing and if it counts for anything, please know that some stranger, living in a cabin in the forest of the Sierra Nevada, will be picking a star out of the millions of clusters showing on this impending, clear night, and will be wishing it for you.
    Sincerely, Karen

  2. Tina- As I lay in bed and read this powerful post of yours- I cry. I look at a picture of Caden as a baby and I see the same as you with Jackson.. Just know you are not alone.. I hope that brings you comfort. Sometimes, it helps me. sometimes…….

  3. Man that hurts. I am so glad you & his dad have the strength & perseverance to raise him. I feel weak in comparison, as my family has not been in such a situation nor do I know if we could do it. I had 2 cousins who were mentally ill, one died at age 12 before I was born, and one who lived into his 50’s in an institution, after he attacked his mother. Neither lived in a time where the knowledge of mental illness or Autism or any changes like these were cared for as well as today. I feel your frustration, but I for one, happen to like Dali. Fight the good fight, Q. 🙂

  4. Thank you. I often look at old pictures of my boys and think the same. So much limitless potential robbed from them. Now I see blank stares. like 2 different sets of twins. So yeah…F**k you Autism.=) oh..and the vaccines that made them this way.

    • I held my middle finger out reading your comment. F**k you, you a*****e ableist. Autism is beautiful. Vaccines don’t cause autism either, it happens upon birth. The potential still exists, you just have to grasp it.

      – Sincerely,
      An aspie

      • Geoff.
        Did you read the entire blog? Or about my son at all? I dare say you did not. I am in no way an “assinine ableist” I celebrate Jackson and his beauty every. Single. Day.

        And nowhere in this or any other post did I mention vaccines causing autism.

        -Sincerely,
        A NT who works tirelessy to aid her severely autistic son. ❤️

  5. I’ve never been to your blog before today but something caught my eye…that picture. With his finger in his eye. That is my son. ❤

    • Hey Janis—me too? What is it that compels them to put their fingers there? I wish I knew what was going on with my son’s body. Unfortunately, he doesn’t speak…….

  6. No matter what picture I looked at I see beauty, a child. I hate AUTISM I despise it, but I WILL NEVER let it define me nor my little guy!! I will tell him every day when he accomplishes something, you are smart, you are loved, you are GREAT! My mother always say, can every child do everything NO, so praise them for the things they can do…

  7. He is a beautiful unique child. My child who is on the spectrum is my miracle. He is brave and smart and has thoughts that are provoking and deep. He will have to be looked after and I hope that we have provided well enough for him. I’m one of the lucky ones. My son is verbal and functions at a level where is might be possible for him to have a job. However, I hurt for him and all of the angst that he has to deal with because of that one word: Autism.

  8. This moved me so much. My beautiful granddaughter has autism, and while i try to be positive and appreciate who she is, i am SO ANGRY. So yeah, fuck you autism.

  9. I get it. I feel it. When I very least suspect it something will trigger it and I’ll feel it in my gut. Like a sucker punch, and I can’t breathe and it’s overwhelming. Somehow it passes, but I know it will be back. Friends and family don’t get it so much. That’s why I started my own blog. Just wrote my first post this week. It’s about recovering myself and finding a center of gravity in all of this while still supporting my son. Big hug to you for being brave enough to use the words and the emotions in this post. It gives me strength knowing it.

  10. It’s very refreshing to read this. So many people are in denial about how debilitating autism can be. It’s exhausting to read these endless monologues about peoples’ wonderful “angels” and how they are just advanced beings who think different than we do and we need to stop trying to fix them. Autism sucks, it’s a pain to deal with, and it’s not a crime to acknowledge that. We still love our kids, we wish this wouldn’t have happened to them, and that’s ok.

  11. What a strong and moving post. I look at this post and get sad and happy at the same time. Maddie is “too young” to be diagnosed with autism so i have no clue if autism will strike her. It makes me sad to think that I may one day look back at pictures with the same feelings you have. But in the same thought I see the joy that this spectacular boy brings to this world. Thanks for pouring your thoughts out with this post.. lots of love Jack and mommy ♡♥

  12. I have a family photo and my little guy that catches my eye every now and then and I think back, “Man…little did we know what was coming our way.” Love your post. Thanks AD for posting so I could find this today!!

  13. I have the same thoughts regularly. I stare at my little fella’s perfect head sometimes and have this urge to reach inside and pull out the Autism. Ridiculous I know, but if only I could.

  14. Pingback: Fuck you, Autism. | myaspiewife

  15. He is beautiful. Your words could be my words. Autism a thief It comes out of now where and steals the dreams and hopes all people have for their children I love my son. I hate Autism!

  16. My heart aches for you and Jack. I have always thought of autism as a bow and arrow from the devil. It is a thief, and it is “confusion.” That is the word that comes to my mind when I think of autism-the personality of confusion that tries to usurp the real unique personality of certain individuals. The devil tries to wrap them up in the saran wrap of confusion so that they cannot express their God-given gift of “knowledge” or something special that God has gifted them with. I think we are in a time where we are able to recognize the different levels of autism as the years pass, but I also believe that there is more than meets the eye with autism-more than the “different way of thinking” that has been passed off to us as of late. I do think there is a biological component to it, but I believe also that there is something deeper going on. I think about autism quite a bit, and ask God to give me some revelation about this “thing” that people are trying to adopt as part of one’s personality-it isn’t. I HATE autism, not the people who struggle with it, I hate autism itself. I believe that it was the will of the Lord Jesus to see people released of their bondages. It says in the bible that one should keep a “sound mind.” I don’t believe that people with autism have a sound mind completely. Also, there is nothing wrong with weaknesses, because they make you strong, but autism is not merely a weakness, it is a bondage in many ways. So, I say that it is up to us to pray hard for this bondage to be lifted, as the Lord wants us to.

  17. I have autism and I almost feel suicidal in stressful situations and when I get bored. I have little motivqtion for anything except eating. I live in a country that is awful with autism and I have to go to a carer’s every week and I fucking hate it!!! My school treats me like I’m not autistic but like I have mental retardation instead and they don’t trust me with anything.

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