Tuesday, November 12, 2013

The Price We Pay for Autism Speaks

I lay in bed last night worrying about how my Autistic children will have to pay for this. Tomorrow, Autism Speaks will hold a National Policy and Action Summit in Washington DC to speak with Congress. As is their modus operandi, Autism Speaks has intentionally excluded Autistic voices in their platform. My children will pay. Please, (if you can stomach it) take the time to read this horrid letter written by co-founder of Autism Speaks, Suzanne Wright, Autism Speaks to Washington - A Call for Action. That venomous woman is talking about my sons. That hateful woman is talking about me. It must be easier for her to spit, when she erases the Autistic adults who oppose her fear for dollars agenda. I cannot predict the repercussions my Autistic children will face in the future because of Autism Speaks' fear mongering ways. I can only describe the suffering I have already spent, at the hands of our Nation's biggest Autism organization.

I was lost. Days before a pediatrician had sent a referral to Early Intervention for my son. I described my state of mind at the time as akin to being hit with a brick. Stunned. I reached out to other Mothers for help and was immediately directed to the "well respected," Autism Speaks website. The brainwashed do wash brains. Ignorance smoothes the process. I hesitated typing in the registration information that Autism Speaks required as entrance. I was scared to make any move, let alone add my child to their list, but I did it. I needed help, I needed information, I needed to understand my child, and apparently Autism Speaks was the way. What followed was the darkest day in my journey of parenting Autistic children. I paid in broken heart.

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!

Lydia Brown of Autistic Hoya: Responding to Autism Speaks

Protesting Autism Speaks' "Policy Summit" at George Washington University

Prewritten Email To Senator/Representative

Possible phone script

Contact information for Senators

Contact information for Representatives


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13 comments:

  1. Okay, as the mother of an autistic child, and a very open minded person, I have read your blog but couldn't understand your plea. You are clearly against Autism Speaks, and yet when I read the letter it was wonderful. You never focus on specific details and only rant about...what?

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    1. That letter was wonderful? No, that letter was horridly dehumanizing and dismissive of autistic people, and our value, rights, and autonomy. It was erasing of autistic adults and uses our numbers as a scare tactic to get people to agree that we shouldn't exist, that our existence is a national emergency, and that something has to be done about us...without our input or consent.

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    2. @Kathleen Austin
      try reading it again imagining you are an autistic child reading it over your mother's shoulder - you will learn that you harm your poor mother terribly, even though you love her so much, you will learn that you are an apalling burden who has ruined your parents lives. Still think it is a 'wonderful' letter?

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    3. ...I fear for your children if you thought that letter was wonderful. What attitude about their brains are they learning?!!?

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    4. I am so glad others were able to respond to your comment quickly Kathleen, because I was too shocked to do that initially. If you think the letter was wonderful, than you and I speak different languages. I don't quite know how to bridge that gap, but I do know that I have a shit load of work to do. If you are an open minded parent, consider opening up to Autistic perspectives.

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  2. TOTALLY AGREE. Why arent people sending us to blogs by autistic adults that provide comfort, information, resources and hope!? They discourage and crush spirits.

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    1. I'm just going to take a stab at it, but I presume it might undermine the grief and suffering rhetoric?

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  3. Evan Kemp said this thirty years ago yet we are still fighting these evil forces! We must persevere!

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  4. I can tell you how Autism $peak's rhetoric will harm your children in the future. My daughter graduated from high school and started looking for a job as Autism Speaks was coming to power. Finding a job for her was impossible with the negativity that was flooding the media. Who would want to hire someone with a disability that “destroys and bankrupts families”? Someone who “drives their parents to thoughts of murder”? Never mind that my marriage is just fine, my family is not bankrupt, and my daughter has had a very positive influence on our lives and our happiness.

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    1. I am sorry to hear of your daughter's experiences. May she continue to make happiness where ever she goes.

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    2. I'm so sorry your daughter experienced that vile ignorant attitude towards her. My son has a wonderful influence in our lives & it's enriched because of him..much like your daughter X

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  5. That letter has to be one of the most ableist things I have ever read... and the fact that it comes from a HUGE money making organization that is plugged by celebrities and claims to represent autism?

    Holy hell, what a disgrace.

    People have to stop looking at those with disabilities as broken. Love this post. Love the movement.

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