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As April 2 approaches, many people prepare to recognize World Autism Awareness Day, an event established by the UN in 2007 and heavily promoted by Autism Speaks, a prominent non-profit organization that claims to advocate for autism awareness. Their “Light It Up Blue” initiative encourages individuals to frame their social media profiles in blue, express their support for autistic individuals, and contribute to Autism Speaks. While these actions seem well-intentioned, a significant number of autistic individuals feel that Autism Speaks does not represent their interests.
If you choose to support Autism Speaks and participate in their “Light It Up Blue” campaign, my aim is not to criticize you. Prior to my son’s autism diagnosis, Autism Speaks was the only organization I knew about, and I mistakenly believed their symbols were universally embraced.
However, it’s crucial to understand that many autistic individuals feel disconnected from Autism Speaks. There are numerous reasons behind this sentiment, and while the organization has attempted to rebrand and has made some progress, its history includes practices that many autistic people find objectionable. Autism Speaks has often portrayed autism in a negative light, emphasizing the challenges faced by “autism parents” instead of amplifying the voices of those who are actually autistic.
I am not here to tell you that you shouldn’t support Autism Speaks; however, I want to highlight that a substantial number of autistic individuals do not endorse them. Some individuals have even labeled the organization as a hate group. You can form your own opinion about what this means for you.
Since I am not autistic, I won’t attempt to speak for the autistic community. Instead, I encourage you to invest time in exploring the perspectives and experiences shared by autistic individuals. To assist you in this journey, here are a few notable quotes from autistic adults expressing their views on Autism Speaks.
In a piece on the Autistic Women and Nonbinary Network‘s website, writer Jenna Thompson states, “Autism Speaks reaches out to families by listing deficits and difficulties an autistic child will face. They create content that frames autism as a tragedy.” Similarly, blogger Rachel Martinez notes, “The blue color used by Autism Speaks reinforces outdated stereotypes about gender and autism, making it more difficult for women and nonbinary individuals to receive proper diagnoses. April has become a challenging month for the autistic community, as they must counteract misconceptions while confronting an organization that has historically marginalized their voices.”
In an opinion article for a campus publication, writer Alex Jordan asserts, “I don’t trust Autism Speaks or similar organizations that view disabled people as burdens. They distort the concept of neurodiversity so much that it fails to represent the reality of our lives.”
This matter is significant to me because of my son, Ethan. At five years old, Ethan has been diagnosed with ASD since he was almost three. However, he has been autistic since before he was even born—the moment I first saw him on an ultrasound.
When Ethan was diagnosed, our developmental pediatrician cautioned us about Autism Speaks, explaining that their focus on finding a “cure” for autism perpetuates the idea that autism is a disease rather than a neurological variation. He recommended alternative resources that emphasize understanding autism as a difference rather than a deficiency. Thanks to his guidance, we chose to connect with autistic adults and heed their insights. We’ve allowed Ethan to thrive as his unique self, prioritizing therapies that enhance his interests, like speech, rather than striving for conformity.
In our home, we believe in celebrating neurodiversity. Every April 2, I share a message: “Gold represents value, just as Ethan is valuable! He’s AUtistic and AUsome! We embrace his autism with joy!”
If you want to express love and support for the autistic individuals in your life on April 2, consider wearing red, illuminating your surroundings in gold, or simply acknowledging their uniqueness.
Before you participate in the “Light It Up Blue” initiative, keep in mind that for many, it doesn’t feel like genuine support, regardless of how Autism Speaks presents itself.
For more insights on autism and how to better support autistic individuals, check out Autistic Advocacy and Autistic Women and Nonbinary Network.
This article was originally published on March 30, 2021.