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April 2 marks World Autism Awareness Day, a date recognized by the United Nations since 2007 and prominently supported by Autism Speaks, a major non-profit organization that claims to advocate for autism. Their “Light It Up Blue” initiative encourages people to frame their social media photos in blue, express their support for autistic individuals, and contribute financially to Autism Speaks. While this may seem like a positive movement, it’s important to understand that Autism Speaks is not universally embraced by the autistic community. Many autistic individuals feel that “Autism Speaks doesn’t speak for me.”
If you are planning to support Autism Speaks or participate in their “Light It Up Blue” campaign, I am not here to criticize your choice. Before my son was diagnosed, Autism Speaks was the only autism organization I knew. I assumed their blue color and puzzle piece symbol were widely accepted. However, I have since learned that many in the autistic community do not share this sentiment.
There are numerous reasons why many autistic individuals distance themselves from Autism Speaks. The organization has faced significant criticism for its portrayal of autism as tragic and mysterious, often prioritizing the experiences of “autism parents” over the voices of those who are autistic. While they have attempted to rebrand and make progress, their history and practices have left many feeling misrepresented and marginalized.
I encourage you to seek firsthand accounts from autistic individuals to gain insight into their perspectives. For example, in an article by writer Jamie Carter on a neurodiversity network, she states, “Autism Speaks perpetuates the narrative of autism as a burden, creating videos that depict autistic individuals as problems to be solved.” Similarly, in a personal blog, writer Alex Quinn notes, “The color blue, associated with Autism Speaks, is seen by many as reinforcing harmful stereotypes about autism being predominantly male, which can hinder diagnosis for women and nonbinary individuals.” Another opinion piece describes the organization as not trustworthy, highlighting a lack of genuine commitment to valuing neurodiversity.
This information is crucial for me as it relates to my son, Leo. Leo is five years old and has been diagnosed with autism since he was nearly three. From the moment I first saw him on an ultrasound, I knew he was special. When we received his diagnosis, our developmental pediatrician warned us about Autism Speaks, emphasizing that their focus on finding a “cure” can portray autism as a frightening disease rather than a unique neurological difference. He guided us to view our child as different, but never broken, which has profoundly shaped our approach to parenting.
Instead of pushing Leo to conform to neurotypical standards, we celebrate his individuality. My older son sums it up nicely: “Our family is like a collection of computers, and Leo is our iPad. We all communicate in our own ways and are unique, yet we share a strong connection.”
In our family, we want to celebrate World Autism Awareness Day without promoting Autism Speaks. There are alternatives! Some people embrace the “Red Instead” movement, which advocates for acceptance and understanding rather than a focus on awareness. For many, blue symbolizes loss and despair, making red a more fitting choice to represent passion and heart. Others choose to “Light It Up Gold”, a campaign that connects the color gold with autism pride and acceptance. In our home, we enthusiastically share this message every year, emphasizing Leo’s uniqueness and our joy in having him in our lives.
So, if you want to show your support for autistic individuals this April 2, consider wearing red, lighting it up gold, or simply acknowledging them in your own way. Before you “Light It Up Blue,” remember that for many, this gesture does not resonate as supportive.
For more information on autism and how to genuinely support autistic individuals, check out resources like the Autistic Advocacy Network and the Autistic Women and Nonbinary Network.