By Karen Reznek
My daughter graduated from high school as A$ was coming to power and
spreading their message of how autism ruins lives. Although my daughter
would be an asset to any company who hired her — she is a hard worker,
reliable, learns quickly, and is very responsible — no one wanted to
hire someone who “bankrupts families”, “destroys marriages”, and “ruins
lives”. Never mind that my family’s finances are in order, my marriage
is just fine, and my daughter is a wonderful, valued part of our lives.
Not in spite of being autistic, but for the total sum of who she is, of
which autism is a large part.
Fortunately for her, Transition Services kicked in two years later, and
Author Archives: loveexplosions
Thoughts From Nicole Wells
By Nicole Wells
Autism Speaks was all I had heard of prior to Nic’s diagnosis. My vast knowledge of autism was Rainman and maybe one other movie – couple with what I saw/read/heard via AS. Scared the crap out of me! So much fear mongering! I was now terrified to be the mother of my sweet, loving, beautiful son! I was not prepared for 40 hours of therapy a week, radical interventions, etc.
Thankfully I have a very curious streak and wanted to do more research. All angles. Stumbled on to Jenny McCarthy and those are minutes & brain cells wasted that I will never get back.
I am so thankful that I found the adult autistics – they have been so generous to share their knowledge, experience and time. My son is thriving in a family environment that is accepting first and foremost.
Autism Speaks Hurts Autistic People
Autism Speaks hurts Autistic people. It hurts families and children. It hurts communities.
I am an Autistic adult but also the parent of an Autistic child. I know the realities of autism. What I don’t know are things like “grief” and “sorrow” and “despair”. I have never felt that way about myself or about my amazing Autistic child.
When my child was diagnosed, I was told to go to the Autism Speaks website. I was HORRIFIED by what I read. My wonderful, beautiful child was a burden. He was going to ruin my marriage. He was going to make me grieve for the “normal” child that I was supposed to have. I watched videos of children in crisis, at their most vulnerable, put on full display for the public. Humiliated by their parents and Autism Speaks to raise money. I saw a mother saying she thought about killing her child in front of that child as if she was not even there. I saw nothing of Autistic adults, as if we didn’t exist either. I was devastated, but not by autism. I was devastated by the lies that Autism Speaks was telling the world about my son. About me.
People have said to me “Oh, I’m so sorry!” upon learning that my child is Autistic. I am seen as an anomaly for loving and accepting my child exactly as he is. I don’t want to fix him, or make him “indistinguishable from his peers”, or to be pitied for the privilege of raising him. All that many people know of autism is the hate, the fear, the despair that is peddled by Autism Speaks. What they know is a lie because our lives are full, wonderful and valuable. We are Autistic and we are not broken. Autism Speaks wants the world to see us as damaged. Every day, we fight for acceptance. Every day, Autism Speaks makes our fight harder.
Autism Speaks claims to speak for us, without us. They claim to speak for our Autistic children while painting them as monsters. I can not stand idly by while this happens. I will boycott Autism Speaks until they make genuine, meaningful change that includes our voices, our reality, and an immediate stop to their campaign of hate against Autistic people. I do this for myself, for my son and for my community.
adaption of an unanswered letter to Sprouts
Printed with permission from the author, Amy Sequenzia
I am not autism, I am an autistic person
My life is not a tragedy, it is a growing process
I have good days and bad days
My parents fought for me, not against me
They fought for my rights
The nights I spent awake made me think about my life
My family and friends also thought about it
They saw me beyond a diagnosis and saw my potential
They accepted me and worked hard to provide me with life experience
When is the rest of the world going to follow their example?
There were times of hardship but I am part of the human race
I am not immune to hardships
My neighbors learned how to see me as a whole person
The ones who never did
Lost an opportunity to experience diversity
I am autistic
I am not a tragedy
I am not robbing anything, anyone
I was not robbed of my life
I am who I am
This is my life
Copyright 2011 by Amy Sequenzia
The Price We Pay For Autism Speaks
The Price Pay For Autsim Speaks by Heather Clark raisingrebelsouls.blogspot.com
The Price We Pay for Autism Speaks
There were videos of other small Autistic children playing, but they were playing the Autistic way, and that was wrong. These children looked just like my son. Right then and there, Autism Speaks solidified all the fearful and false ideas about Autism that I had whirling around in my confused head. Everything on the site, everything surrounding these videos of beautiful children playing, cemented my ignorance, reduced my hope, and sent me into a tailspin of pain.My son became wrong (and eventually both of my sons became wrong). I cried more than a Mother should in that one darkest day because I believed it was my child who was lost. I believed the Autism Speaks lie. The one Suzanne Wright is telling our congress tomorrow. It cost me something good.
The most important factor in any child’s health and happiness is their relationship with their parents, but Autism Speaks’ work directly damaged the connection I had with mine. Because they created such a sense of urgency and panic within me, because they recommended intense and unreasonable therapies, because they portrayed my Autistic children as inherently wrong and in need of fixing, I settled into grief before I had a chance to collect my thoughts and make sense. Instead, I let a sense of separation grow between the people I love most and myself. I saw a divide where there never was one. I subjected my children to evaluations, therapies, and schedules that I imagined would create a path for our connection, but the truth is that I was letting the negative ideas promoted by Autism Speaks take that away. I let them rob me.
Autism Speaks continues to exploit my children’s neurology and they take advantage of the vulnerability of parents everywhere. They hold our hearts and minds ransom. Now they broaden their attack to gain more control within our government. They attempt to legislate their ableist ways. I lay awake late last night, and I woke up too early too. I hold myself responsible for believing their lies. I hold guilt and shame for it. There is no refund for the time and love I lost. None of my pain has worth though, not compared to what they have done to my sons, not compared to what they have done to all Autistics, not compared to what they will do tomorrow. They are creating a debt of hatred, my Autistic children cannot afford. Autism Speaks needs to pay.
Please get involved!
Why? Why? Why?
“We love how Evie is always happy & smiling.”
This is a picture of the note that Evie’s para educator wrote yesterday.
Today her note was short.
“Great Day! So happy all day long!”
This is my Evie.
Full of love. Full of life. Full of happy.
This is my child. And I love her with every corner of my being.
I’ve been labeled as radical–part of a fringe movement.
When did a mother’s love for her child become some sort of unthinkable political statement?
Here’s the thing. Evie is Autistic.
My love cannot be contained in those tragic little boxes that it is supposed to fit in when you’re the mother of a non-speaking Autistic child.
And I don’t try to confine it. So it explodes out all over the world.
Just like it has always done.
Because freaking damnit!
Evie deserves more love than I will ever be…
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