It is almost April and it is the time of the year when Autistics have to remind the rest of the world that we are human beings, that we have human feelings.
We need to do that because, more than in any other month, April is when we are talked about, bashed, blamed and demonized, without being asked it feels being erased of our own lives.
It is when the most hateful autism advocacy organization – known as Autism Speaks – will double down on the rhetoric, telling all the world that Autistic people are lost, suffering and causing pain to our families, that we are burdens on society’s resources, that we will never be able to contribute to humanity (unless we endure hours of torturous training, known as ABA, so we can learn how to comply with a majority that will ignore, shun, dismiss and hate us).
Autism Speaks and its very savvy marketing machine will raise millions of dollars by telling parents how desperate they should feel that their child is not the child they were supposed to have. The message is absorbed, and even embraced, by parents who will create “teams”, walk in circles, donate money and go home without the promised help and the accurate information they need.
Other advocacy organizations led by, and directed at parents will follow Autism Speaks lead. Those organizations don’t use hate as their main tool to raise money but still rely on the same rhetoric of despair. With some positive words thrown in their donation request letters, they still deny us a voice in the conversation about us.
Just look at how many of us, who could be employed, are still denied opportunities.
Just look at how many institution-like communities are being developed to isolate us by using fear – the fear parents have that nobody will “care” for their children – in order to “unburden” society with our existence.
Look at how communities still lack resources, services and supports for Autistic children and Autistic adults.
Look at how much more the still small, but growing, Autism Acceptance Movement has accomplished by promoting and valuing Autistic voices and Autistic lives.
Autism Awareness only uses so-called “deficits” of Autistic people in their campaigns. The list tells the world that
We CAN’T do what “real people” do.
We WON’T be what we dream of being.
We will NEVER accomplish anything that can be considered valuable.
Autism Awareness divides us in a “good” group, which is promptly ignored and dismissed as not really Autistic, and a “bad” group – people like me who need extensive supports – which is promptly dismissed as too damaged and not sentient enough to be heard.
The world doesn’t need to BE AWARE of us because the pathologizing language, the deficits lists only make the world BEWARE of us. You can still participate in the Autism Awareness Month, if you promote awareness without blaming us for who we are, without blaming us for society’s unwillingness to accept us as equals. By refusing to use a list of deficits we supposedly have, you can raise awareness about:
.The lack of inclusion in schools, despite studies showing that ALL students benefit from inclusive education.
.The lack of support for all forms of communication, because only one method doesn’t fit all.
.The scarcity of services and supports for Autistic children and Autistic adults who need a lot of them. I am one of such Autistics and I have a pretty good life and, currently, great human support. I am lucky, an exception though.
.The lack of respite care for parents of Autistics who still don’t have the supports they need to fully participate in society. Yes, sometimes it is hard to be Autistic, sometimes it is hard for parents when some co-occurring conditions take over and overwhelm their children and the whole family. The need for respite is not shameful, in the same way that being disabled and needing help is not shameful.
.The disrespect shown at us when our private moments and our image are used as a way to gather sympathy for others, while our dignity and our self-determination are ignored
.The lack of job accommodations. A – still – very small number of companies have proven that Autistics can work and are good at many jobs.
.The disrespect from organizations that promote conferences and reserve the brightest spot to people who don’t believe we are fully humans. No matter how they justify that, these people still make money by demonizing us.
.The “crumbs of goodwill” thrown at us by the same organizations that gush all over people who dislike the Autistic community.
.The many conference organizers ignoring that most Autistics, being part of the disabled community and therefore poor, could benefit from paid lectures and paid essays. We have the lived experience that can help future generations.
.The fact that most of the money raised by the current model of Autism Awareness is used to promote research and studies to erase our voices, our participation and our existence.
Most importantly, you can raise awareness about the lack of awareness people who insist on Autism Awareness are about Autistic people and Autistic lives.
About the Author, Amy Sequenzia