Autism speaks but not for me

Why #lightitupblue gives me the blues

April is Autism Acceptance Month, and with it comes a flood of people tweeting #lightitupblue without an actual understanding of where it came from and why it is problematic.

The hashtag “lightitupblue” was started by Autism Speaks, an organization that claims to help autistic people but in actuality demonizes them and spreads misinformation. Blue was chosen as the color because males are more frequently diagnosed with ASD (Autism Spectrum Disorder). However, although it was once assumed that males are more likely to have ASD, recent studies show that in reality, females just display different symptoms, and thus fly under the radar.

Autism Speaks has constantly and repeatedly framed autism as a disease that needs to be cured, even comparing it to both AIDS and cancer in a 2009 video. In fact, their mission statement up until late 2016 stated, “We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder.”

Autism is not a disease that needs to be “cured.” It is a social developmental disorder. Yes, some things are significantly more difficult to deal with, but it is not the life-threatening disease that Autism Speaks frames it as. I have personally been diagnosed with Asperger’s syndrome, which is on the autism spectrum.

I have significant difficulties with socialization, but I am also able to pick up on tiny details a lot easier than neurotypical people. On one hand, I have been ostracized by my peers for being “weird,” but I can see solutions to problems other people can’t. Being on the spectrum does present significant challenges in everyday life, but it also comes with unique strengths.

That being said, I certainly do not speak for all people with autism. My life experiences are vastly different than someone who society would classify as “lower functioning.” However, a quick google search shows that people all over the spectrum do not support Autism Speaks for a variety of reasons.

If you want to support an autism-focused organization, consider donating to ASAN- the Autistic Self Advocacy Network. Unlike Autism Speaks, they have several autistic staff members and are actively working towards greater public acceptance and higher self-advocacy.

As their mission statement says, “We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!”

The most important thing is listening, really listening, to autistic people and hearing their voices; don’t speak over the people you are trying to support. And instead of #lightingitupblue,  try #redinstead. Unlike #lightitupblue, #redinstead promotes both autism awareness and acceptance. It’s exactly like ASAN said: nothing about us, without us.