A few months ago I sat in my daughters psychiatrists office listening intensely as he explained her diagnoses to me. One by one he went down the list; some I was familiar with other left me clueless. Oh goody more googling when I get home. I was saying the words over in my head so that I would properly remember them upon leaving. It was then that he mentioned ASD. Now this was a term I was very familiar with, I first heard it when my daughter was about 5 years old.
ASD = Autism Spectrum Disorder
Before, for her, it was a theory...never confirmed. But on that chilly Fall day; my "fears" were brought to life. Why fears? Simply put, I had been following Autism Speaks since her PCP originally mentioned his belief that she may be autistic. Why would following Autism Speaks bring out fears? Glad you asked!
These are words that Autism Speaks uses to talk about Autistic people and their our families:
Barely Living. Battle. Burden. Crisis. Crusade. Despair. Fear. Missing.
My daughter's life, our life is beautiful and chaotic, joyful and mundane. Yet, Autism Speaks is telling me, telling us, telling the world to HATE...to HATE my daughter, to hate my family, to hate our families.
This is one of the many reasons why I now boycott Autism Speaks.
According to autism speaks, via an atrocious video "I am Autism", we are told things like, "I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined...I will make sure your marriage fails." While they removed the video you can still find it on YouTube. While on one side I see the concept they way the portrayed such is horrible! Demonizing autism dehumanizes people with autism, this is NOT okay!
My point of this post is to point out that Autism Speaks helped create a stigma that makes difficult for people like my daughter to be heard. I have heard that autism is a child's disorder. If that is the case, where are all the adults with autism? Oh that's right...they are all around us often
misdiagnosed with learning or intellectual disabilities.
Most likely have seen the puzzle piece that has become the symbol of autism. In no way, shape or form is puzzle piece an accurate representation of my daughter! Maybe it better represents the fears and uncertainties of medical professionals, educators, researchers, etc.. My child with autism is no more a puzzle to me than her 15 year old sister.
My theory comes from a "lovely" video "Autism Every Day", which features an Autism Speaks board member talking about her contemplation of murder-suicide of her daughter. To make matters worse this was said in front of her daughter! Once again, Autism Speaks removed the video, I can't imagine why. In fact much of Autism Speak's money goes toward research, much of which is focused on finding a way to eliminate autism. And why wouldn't they? This is the same organization that aligned themselves with Judge Rotenberg Center - a center that used electric shock! Pardon me but WTF?!?!
Did you know that Autism Speaks wants to eliminate autism and that they support eugenics? I am not suggesting they are full of Nazis, so please do not take it that way, but unless a "birth defect" is uniformly lethal to or at birth who should really get to decide whether that trait or condition is "undesirable"? I can not, in good conscience, support anyone or anything that wishes my daughter could have been prevented.
I do however support the idea of changing society to make it more accommodating for people who are different. I support developing therapies and tools to relieve those suffering for ALL disabilities, including autism and accompanying conditions. But alas, Autism Speaks is known for not spending money in ways that actually support autistic people and their families. Up until a few months ago, I thought Autism Speaks had our children's best interest at heart; I believed they were doing good. I did some research. I was wrong. I did not know then, but now I do.
Before I end this post I want to take a moment to tell you what life with MY autistic child is like. Are you ready for it?
It's life. Period. We make accommodations for her just as we do for her non-autistic siblings. End of story.
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