As we approach World Autism Awareness Day on April 2, it’s crucial to understand the complexities surrounding autism advocacy. Established by the United Nations in 2007, this day is prominently highlighted by Autism Speaks, a major non-profit organization that promotes its “Light It Up Blue” campaign throughout April. The campaign encourages individuals to show support by changing their social media profile pictures to blue and sharing their love for autistic individuals while also donating to Autism Speaks.
While this initiative may seem positive on the surface, it’s important to note that Autism Speaks is not universally endorsed, especially among many autistic individuals. In fact, a significant number express the sentiment that “Autism Speaks does not represent me.”
If you choose to support Autism Speaks and participate in the “Light It Up Blue” campaign, I’m not here to criticize your decision. Before my child was diagnosed, Autism Speaks was the only autism organization I was aware of, and I believed their blue logo and puzzle pieces were widely accepted symbols of autism. However, I’ve since discovered that this is not the case.
The reasons many autistic people distance themselves from Autism Speaks are extensive. The organization has faced criticism for its long-standing portrayal of autism as a tragedy and for prioritizing the experiences of parents over those of autistic individuals. They have also been accused of promoting a narrative around autism that many find harmful.
I don’t intend to dissuade you from supporting Autism Speaks, but it’s essential to recognize that a significant portion of the autistic community does not share this support. Some even label Autism Speaks as a hate group. Your own conclusions on this matter are important.
Since I am not autistic, I will not speak for those who are. Instead, I encourage you to invest time in researching this topic and listening to the voices of autistic individuals. To assist you, here are a few poignant quotes from autistic adults regarding Autism Speaks:
In a piece for the Autistic Women and Nonbinary Network, Amy Sequenzia notes, “Autism Speaks reaches out to families by listing the deficits, difficulties and ‘pain’ an Autistic child will experience ‘forever’; they make videos that paint autism as the cause of all the troubles in the world.”
Cassandra Crosman, writing on her blog, explains, “Many autistic people don’t resonate with the color blue used by Autism Speaks, as it perpetuates the stereotype that autism is predominantly a male condition, making it harder for women and nonbinary individuals to receive a proper diagnosis.”
In an opinion article for The Student Life, Donnie Denome expresses distrust towards Autism Speaks, stating, “I don’t want Autism Speaks to change; I don’t believe they value neurodiversity in any meaningful way.”
These perspectives resonate deeply with me because of my son, Ethan. Diagnosed with ASD just before his third birthday, Ethan has always been an integral part of our family. A developmental pediatrician once cautioned us about Autism Speaks, highlighting their focus on finding a “cure” rather than embracing autism as a neurological difference. This advice has been invaluable, allowing us to celebrate Ethan for who he is rather than viewing him as broken.
In our household, we strive to support all the unique individuals like Ethan. Instead of supporting Autism Speaks, we prefer to participate in the Red Instead movement, which symbolizes acceptance rather than mere awareness. Many autistic individuals prefer the color red, which represents passion and heart.
Another alternative is the Light It Up Gold initiative, which celebrates autism with a color that signifies value. As I often share on April 2, “Gold is a precious metal, just like Ethan! We don’t feel blue about his autism; we celebrate it!”
On this day, you can choose to wear red, light up gold, or simply acknowledge and appreciate the autistic individuals in your life.
Before you decide to “Light It Up Blue,” consider that for many, it may not represent support, regardless of how Autism Speaks presents itself today. For further insights on autism and how to support those in your life, check out Autistic Advocacy and Autistic Women and Nonbinary Network.
Summary
World Autism Awareness Day prompts important conversations about advocacy and representation within the autistic community. While Autism Speaks has popularized the “Light It Up Blue” campaign, many autistic individuals feel misrepresented by the organization. Alternatives, such as the Red Instead and Light It Up Gold movements, focus on acceptance and value rather than stigma. Engaging with the perspectives of autistic individuals can foster a better understanding and support for them.