A Mouse that Roars - Standing in Defiance of Autism Speaks

Trauma Trigger Warning for language and ableism

On November 13, 2013, Autism Speaks will unleash the full force of its corporate lobbying budget and political action money on Washington D.C.. Autism Speaks is bombarding the District of Columbia with advertising, showering universities with research funding and overwhelming the locals with overwrought, ableist, tragedy rhetoric in order to fulfill their corporate agenda. Anyone in their way will be crushed underfoot. Any person objecting to or criticizing how they do business will be legally dealt with. Autism Speaks has repeatedly made that point, and it was again made clear when they rescinded a job offer to the mother of an autistic teen who requested reasonable accommodation to care for him during her work day (click here for details on that incident).

Tomorrow, autistic disability rights activist Lydia Brown will face down this bombastic display of corporate wealth and power and try to be heard. She will stand in defiance of Autism Speaks' three day "national policy summit" that excludes the voices of autistic adults who advocate for their peers. I am the mother of one of those "children who will need help all their lives". I am an autism mother. I stand with Lydia Brown in defiance of Autism Speaks. 

Yes, gentle people. I am asking that all of you stand with us against this frightening force lumbering forward with no interest in our families or in autistic people who are growing up and aging. Autism Speaks is inhumanely imposing their idea of what our community needs and attempting to mandate everything from how my son will be housed to funding research that has no real benefit to my son or his peers. Note that no research funding is going to technology that provides more effective augmentative alternative communication devices, when the primary challenge to autistic individuals throughout their lifespan is communication. Assistive technology solutions for autonomous living are not funded by Autism Speaks research money. Mrs. Suzanne Wright refers to autistics as "the autism crisis", dehumanizing them in a most ableist manner. She goes on to equate my son and his peers, who are still very much here as being "missing", a clear reference to the highly offensive "Ransom Notes" campaign launched by New York University discussedhere. Her exact statement in this excerpt from her blog post, entitled Autism Speaks to Washington - A Call for Actionis

"This week is the week America will fully wake up to the autism crisis

If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing."

Suzanne Wright

Her entire disturbing post can be read here.

For all those saying that Autism Speaks is understanding neurodiversity, the message is clear that at Autism Speaks, tragedy, ableism, and fear tactics are still the order of the day. My son's challenges are enough without Autism Speaks using them to push their own agenda in his name without his voice in his own affairs. He's not lost. Only Autism Speaks has lost touch with the very autistic people it professes to represent. Autism Speaks has no autistic governing representation of any significance on their board of directors. Please take the time to read Ms. Brown's latest post here.  Read about how autistic adults were treated by people who were participating in the juggernaut Autism Speaks fundraising event machine here when these young autistic activists exercised their right to protest the event. Autistic adults are our children, grown up. Do we want our children to be voiceless and passive, accepting what people who do not understand or care about them decide about their lives? Or do we want to know that they are standing together to defend their own right to speak for themselves and control as much of their own lives as they can?

Autism Speaks promotes ABA thoughtlessly, ignoring documented harmful outcomes like learned helplessness that must be dealt with years after this intervention ends. Parents and autistics of all ages who are capable of self advocacy should be given the right to choose what accommodations, supports, services and help they need. What the wealthy grandparents of an autistic child deem worked for him must not therefore be mandated for all of us. Autism families and autistic adults who don't agree with the way Autism Speaks approaches autism should not be simply subjected to their dictated national policy. No organization has the right to remove my son's right to be heard and mandate whether  and how my son is included in his school and his community.  I will not let Autism Speaks silence my son as he grows up. I will not allow Autism Speaks to usurp my voice as a parent and mandate what it thinks my son needs. Autism Speaks does not have that right.

Autism Speaks has no right to perpetuate policies that leave my son at the mercy of strangers in isolation from his own community, chemically lobotomized because their organization is uncomfortable with his apparent differences and degree of impairment. I look different from people who are white. My nose is wider. I will not narrow it. My skin is darker. I will not lighten it. I am visibly different from Mrs. Suzanne Wright. Should she then speak for what I need because she is in a position to bestow large quantities of money on those who make decisions? I thought this was the United States of America. I can speak for myself and adults with my son's degree of impairment can speak for him, until he can clearly communicate his needs himself. Only someone who knows what road my son will travel as an adult can know what he needs. Sorry that is not someone who is not autistic.

I will stand with Lydia Brown and disability and human rights activists in defiance of the mega nonprofit Autism Speaks.  For those of you who say Autism Speaks has good intentions, I respond that the road to a hellish future for my son and too many of his peers is being paved with their good intentions. We are at the crossroads of a very dangerous turn in the road of nonprofit public policy lobbying. Will this organization dictate the lives of your children? Is the future that you see for your grown son or daughter? A future of poverty and dependence on people paid to care for them after you are gone? Look further. We have the technology to vastly improve the quality of life for my son and his peers. Isn't it sad that the push for assistive technology development for wounded warriors is encouraged but that drive does not exist for our community? We must take a breath, step away from sadness and ask each day how our children will live as independent adults. 

The goal is autonomy. I want the whole American Dream for my son. I want lifetime educational access so he can continue learning until he reaches his highest potential. I want supported employment beyond him pushing a shopping cart. I want him to live on his own in clean, safe, housing beyond poverty. I want him to be an active part of his community. No revamped institutional residential housing is going to be accepted by me for my son. I have seen segregation. That didn't really work out for us people of color at all. We decided that was enough of that. How is that supposed to be ok for my disabled son?

I will be a mouse who roars. Even if I cannot be there in person, I want to be there in spirit, and so today I roar for Lydia Brown, and all those who will stand with her. A friend has a blog with a title that describes the unstoppable force headed Autism Speaks' way tomorrow.  The title is "Small But Kind of Mighty".

Lend your voices to ours, online and in person. Roar for your progeny. Demand more.

Here is my thank you to every brave soul who stands and speaks for my son. In solidarity.

Nothing About My Son Without HIm.