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April 2 marks World Autism Awareness Day, a designation by the UN since 2007. It’s prominently promoted by Autism Speaks, a notable non-profit that positions itself as an advocate for autism. Their “Light It Up Blue” initiative encourages individuals to showcase blue frames on social media, express their affection for the autistic individuals in their lives, and contribute financially to Autism Speaks.
While these actions may seem positive, it’s important to recognize that Autism Speaks is not universally endorsed. Many autistic individuals assert, “Autism Speaks doesn’t represent me.” If you support Autism Speaks and the “Light It Up Blue” campaign, my intention is not to criticize or judge your choices.
Before my child was diagnosed, Autism Speaks was the only autism organization I knew about. I assumed the blue color and puzzle piece imagery were universally accepted symbols for autism, but I have since discovered that this is far from the truth.
Numerous reasons exist as to why many in the autistic community distance themselves from Autism Speaks. The organization has a controversial history, often depicting autism as a tragic affliction and prioritizing the narratives of “autism parents” over those of autistic individuals. Although they’ve attempted rebranding and claim to be making strides, many still view their past actions critically.
I don’t intend to dissuade your support for Autism Speaks; rather, I want to inform you that a significant number of autistic people feel otherwise. Some even label the organization as a hate group. It’s up to you to consider what this means for your own involvement.
Since I am not autistic, I will not speak on behalf of the community. Instead, I encourage you to invest time in exploring diverse perspectives from autistic individuals. To begin, here are some direct quotes from autistic adults regarding Autism Speaks:
In a piece for the Autistic Women and Nonbinary Network, writer Jamie Thompson shares, “Autism Speaks focuses heavily on the deficits and challenges faced by autistic children, while failing to acknowledge the strengths and joys of being autistic.”
Cassandra Martinez, in her blog about neurodiversity, states, “Many autistic individuals feel alienated by the blue color associated with Autism Speaks, as it perpetuates gender stereotypes and complicates accurate diagnoses for those who don’t fit the male mold.”
In an opinion article for a college publication, writer Alex Johnson expresses, “I don’t trust organizations like Autism Speaks that portray disabled individuals as burdens. I seek out groups that celebrate neurodiversity.”
As a parent, I’m particularly invested in this dialogue because of my son, Lucas. Diagnosed with ASD just before his third birthday, he has always been unique—something I cherished from the moment I first saw him on an ultrasound.
Our developmental pediatrician warned us about Autism Speaks, emphasizing that their focus on finding a “cure” can paint autism as a disease rather than a neurological difference. He advised us to find resources that uplift autistic voices and to view our son as different, not flawed.
This guidance has been invaluable. We’ve chosen to focus on therapies that align with Lucas’s interests, understanding that he doesn’t need to conform to neurotypical standards.
For those who want to show support for the autistic community on April 2, there are alternatives to “Light It Up Blue.” The Red Instead movement advocates for acceptance rather than awareness, promoting a color that signifies warmth and passion. Another option is “Light It Up Gold,” which emphasizes the value of autistic individuals, symbolized by the color gold.
In our household, we proudly post each April 2: “Gold is the color of value, and so is Lucas! He’s AUtistic and AUsome!”
If you wish to support the autistic individuals in your life, consider wearing red, lighting it up gold, or simply acknowledging their unique qualities.
Before you choose to “Light It Up Blue,” it’s crucial to understand that for many, this action doesn’t convey support due to Autism Speaks’ history. To learn more about autism and how to best support autistic individuals, check out this resource or this one.
Summary
This article discusses the implications of participating in the “Light It Up Blue” campaign for Autism Awareness Day. It highlights the controversy surrounding Autism Speaks, an organization that many autistic individuals feel does not represent them. The piece encourages readers to explore alternative ways to show support, such as the Red Instead and Light It Up Gold movements, focusing on acceptance rather than awareness.
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