Autism Speaks…Are You Listening?

When I was little and started to type, I was saying things like “life with autism is insanity”.  I didn’t recognize autism as an important part of who I am and I was only repeating what I heard. My parents were supportive of my typing and loved me deeply. But they also were told that I could never be happy as long as I “had” autism. The efforts, “experts” said, from families and advocates, should be towards supporting research to find a cure.

That was a long time ago. At some point in my life, I started thinking for myself and accepting autism as the most important part of my personality. I am autistic and that’s who I am. It wasn’t easy and it was bumpy. But if today I am accepted by a growing number of people, if more people read and value what I write, it is because I accepted myself as I am. And I am a proud autistic woman!

Saying Autism Needs to Be Defeated Sends the Wrong Message

I do not have the advocacy organizations of my younger years to thank for that. Back then, they proclaimed in their names that they would “defeat” and “cure” autism – NOW!  They were saying that I had to be defeated, cured from a terrible condition, exterminated. They never paused to think that I, and other autistics, did not really want to be discarded as undesirable. And it is scary when people keep saying that we don’t deserve to be here.

Today things seem to be even worse. Even for me, although I have found my place and my voice. My family and close friends have accepted me as autistic, but the challenges I face are made worse by the negativity Autism Speaks and their followers link with being autistic.  Things are worse because those organizations that once wanted to see me gone, today follow the lead of Autism Speaks.

Most of the Money Raised Goes to Research Not Services

Autism Speaks is a powerful organization, with support of many celebrities and easy media access. I believe most of the celebrities that help making Autism Speaks so recognizable don’t have an understanding of what autism is. They probably want to help and they buy into the picture of despair spread by Autism Speaks.

The same is true for the thousands of people going to “autism walks” and donating money to Autism Speaks. They don’t know, or refuse to acknowledge, that the message they are supporting is that society should fear and segregate their children; they don’t know, or refuse to acknowledge, that all the money raised will not be used to help their children with education, services or accommodations that can make navigate the world a little easier for their children; they don’t know, or refuse to acknowledge, that a lot of the money is used to advertise their children as burdens, as people society should shun, isolate and eventually eliminate.

I Am Disabled and Different, but Not Less

We, autistics, know this well and, with our allies, have been very vocal about the damages Autism Speaks is doing to our lives and to our future.  I keep thinking about my life. Accepting myself was a difficult and long process. My self-esteem was low and I did not have consistent support. People in my life were torn between believing the messages of despair and gloom, and seeing me as a whole person – disabled and different, but not less.

Eventually, we were able to move forward in our process and this is my point: I cannot avoid thinking that it could have been easier, that time would not have been lost and that I could have had many opportunities – now gone – in my life if my family had been offered more support instead of being told I was too defective and that my only chance to be a “real person” was if I could be fixed.

We Need to Cure False Assumptions About Autism

But I am here today, speaking out, despite the predictions of a lesser life. If organizations like Autism Speaks were really thinking about us, they would stop spreading fear of autism and they would start talking to us, the only true experts on autism. They would then help us achieve the goal to cure what really needs to be cured: the false assumptions of what life as an autistic person is, what life with an autistic person is.

And I mean talking to all of us. I for example, am one of the adults Autism Speaks considers helpless and a burden to society. I am said to be a tragedy for my family, although I am not and Autism Speaks cannot tell my family how they should feel about me. I can give the so-called “experts” valuable information about how to better help me with the difficulties I face.

Families Need a Message of Hope Not Despair

Autism Speaks hurts us when families of newly diagnosed autistic children have their energy drained by the negative messages they get from that organization. The fear and the bleak future is all they get. They start resenting the child in front of them and they start hoping for a “better”, “non-defective” child. They waste their energy trying to fix what is not broken, what is simply different. And the autistic individuals are silenced, with an uneasy feeling that we are disappointing to the people we love, that no matter how much we try, we will never be good enough, ever.

If the messages and information they get come from Autism Speaks, they never see autistics that are happy, accomplished, successful and thriving, as autistics, in our own way; or the families that are not suffering, despairing, afraid of the future or depressed because a child is autistic; they don’t see that, fear replaced by acceptance, no longer makes sense. When more families accept autism, they work for the rights of every autistic. And this is a good goal.

We Can All Thrive in Our Own Way

Autism Speaks hurts us when they use all their resources trying to make us look like not good enough for society. We need to fight for acceptance, so that families, allies, educators and policy makers can re-direct their energy to what is uniquely important to each autistic child and adult, so that we can all thrive, in our own pace, in our own way.

No burden, no tragedy, no fear, no despair. Those concepts come from Autism Speaks, an organization that never listened to autistics, and is not interested in listening to us. They don’t have the insight, the expertise and ultimately, the right to direct the conversation about autism. This right belongs to us and we are the only ones who can decide who our allies are, who can speak on our behalf.

Editor’s Note: This post was originally written in 2012 and has been updated with a new featured image, headings and author bio. 

Photo Credit: Flickr/rawdonfox

Amy_Sequenzia_150x150Amy Sequenzia blogs regularly for Ollibean and Autism Women’s Network.