I want to talk about Autism Acceptance again. I want to talk about Autism Acceptance because soon we will be, again, referred to as tragedies, burdens, afflictions. This will go on, more than usual, for the whole month of April.
April is the month chosen by non-autistics to raise “awareness” about our existence. But most of the conversation does not include us, autistics, and the outcomes of such conversations do not improve our lives.
Autism “Awareness” Month is a frustrating and sad month for Autistics, because it excludes us, while portraying us in a negative way.
It has become a “war cry” for advocacy organizations. But it has become damaging to us.
There are myths and misconceptions that get talked over and over without our voices to educate the public:
- The scaring statistics and the epidemic. There is no increase in the number of Autistics. We have always been here, we will be here until we die.
- Every time autism is mentioned in fundraisers, adds, posters and the mainstream media, the “awareness” campaign becomes the “beware” campaign. It advertises fear by using words and images that invoke hopelessness, tragedy and devastation.
- Autistic adults are never invited by the mainstream media to talk about autism. The same media invites “experts” to perpetuate the “beware” message. Of course, they don’t want to show successful and happy Autistics.
- When an Autistic person is killed, sometimes murdered by a family member, it is not unusual for the media and advocacy organizations to stand by the murderer, “understanding” their “despair”, having to face and “deal” with an Autistic child. The victim is forgotten, dehumanized. The message? Our lives are not worth living.
- The biggest organization raising money in the name of autism spends most of the money in cure researches, advertisement (usually vilifying us) and fundraising (“fear” message). The money is not used to improve the lives of Autistics.
- There are a number of researches, some of them very bad science, that are trying to find a cause for autism. All the studies get Op-Ed space in major publications. Autistic voices are largely left out.
- People who believe in the autism awareness message also tend to believe in statements like Joe Scarborough’s comments after the Colorado movie theatre shooting. He said it “happens more often than not” that Autistic people eventually turn to violence. This is false and offensive. The same happens every time someone commits an act of violence. We get lumped together with people who commit evil things only because we are different, even though facts don’t back any correlation between autism and violence.
Why do we believe the autism awareness message is more damaging than helpful?
Because it is based on the deficit model; because it emphasizes what we cannot do and does not talk about how we do things – differently.
The message is hostile to us, it blames autism, who we are, for families “suffering” and for almost every undesirable event in a person’s life.
Autism awareness should be about the lack of resources, services and supports we face, from school to adult life. There is too much emphasis on trying to make us look more neurotypical, and not enough focus on trying to find better accommodations and supports to make it possible for us to succeed.
Autism awareness should be about support research that can help Autistics who experience complications of the digestive system; to support research that can help us with sensory overload; to support research that help the ones among us who haven’t yet found a way to communicate.
Instead, a lot of money is spent on trying to find a cure – that does not, and will not, exist – and on “causes” that sound more like a blame game – and bad science.
Autism awareness should be about a more welcoming world to all Autistics. Right now, it is about pity and fear.
We, Autistics, prefer to increase Autism Acceptance.
Autism Acceptance is about understanding that we are different, not less; it is about seeing us as fully human, as whole people.
Autism Acceptance is about supporting us with what we need, so we can show our potential and participate and contribute within the larger, diverse society.
When there is Autism Acceptance, we can reach more people with our expertise on autism. We can help future generations.
Autism Acceptance will mean that, instead of parents despair, or the fight for services and programs that try to make Autistics look and behave “normal,” Autistics will be embraced, celebrated and included – no matter how “severe” the autism may be.
Because we will stop using all the energy grieving about a person who never existed and start trying to find solutions for a better inclusive, neurodiverse society.
Autism Acceptance is our Civil Rights Movement. It is about respect, inclusion and understanding.
I am talking about Autism Acceptance because I believe it is time for us to lead the conversation.
I believe we deserve a seat on every TV or radio show when they discuss autism.
I believe we deserve a voice in every publication that decides to write about autism “awareness.”
I believe all that because I know we are the true, and only, Autism Experts.
So, if you can, use Facebook, Twitter, email and other social media to contact reporters, journalists, newspapers, TV and radio shows, “experts,” professionals and parents to tell them we want, we demand, to be part of any discussion about autism.
I mean all and any of us, including the ones the “beware autism” campaign likes to portray as hopeless. I am one of those Autistics and I am available.
Nothing About Us, Without Us! I don’t want to feel sad and frustrated in April. I want to feel accomplished and I want to see my people change the conversation. I want the public to see that we lead the conversation about autism, that we are the real experts.
About the Author, Amy Sequenzia.