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
Add your post now!