April 2 marks World Autism Awareness Day, a date established by the UN in 2007 and prominently promoted by Autism Speaks, a major non-profit organization that claims to advocate for autism. Their “Light It Up Blue” initiative encourages people to adorn their social media profiles with blue frames, express their love for autistic individuals, and contribute to Autism Speaks.
While these actions may seem positive, it’s crucial to understand that Autism Speaks isn’t embraced by all. Many autistic individuals express the sentiment that “Autism Speaks doesn’t represent me.”
If you choose to support Autism Speaks and engage in the “Light It Up Blue” campaign, I’m not here to criticize you. Before my child received his autism diagnosis, Autism Speaks was the only autism organization I knew, and I believed their symbols were universally accepted. However, I’ve since realized this is not the case.
There are numerous reasons why many autistic individuals distance themselves from Autism Speaks. The organization has a long history of being criticized for portraying autism in a negative light, emphasizing the experiences of “autism parents” over those of autistic individuals. They have been accused of misrepresenting autism as a tragedy and have faced backlash for various controversial statements and actions.
I’m not here to dissuade you from supporting Autism Speaks; rather, I want to highlight that a significant number of autistic people do not support them. Some even label them a hate group. It’s essential for you to consider what this means for your stance.
As a non-autistic individual, I can’t speak for the autistic community. Instead, I encourage you to invest time in learning from autistic voices. To get started, here are some direct quotes from autistic adults sharing their views on Autism Speaks.
Amy Sequenzia
In a piece for the Autistic Women and Nonbinary Network, writes, “Autism Speaks reaches out to families by listing the deficits and difficulties an Autistic child will face ‘forever.’ They portray autism as the source of all troubles.”
Cassandra Crosman
On her blog, In The Loop About Neurodiversity, notes, “Many autistic individuals are uncomfortable with the blue color associated with Autism Speaks, as it perpetuates gender stereotypes and makes it harder for non-binary individuals and women to receive accurate diagnoses.”
Donnie Denome
In an opinion piece for The Student Life, states, “It’s not about hoping Autism Speaks will change; it’s about understanding that organizations viewing disabled individuals as burdens to their families aren’t likely to embrace neurodiversity meaningfully.”
This issue resonates with me deeply, especially concerning my son, Leo. Diagnosed with ASD at just under three years old, he has always been perfect just the way he is. When we received his diagnosis, the developmental pediatrician cautioned us against Autism Speaks. He explained that their focus on “curing” autism frames it as a disease rather than acknowledging it as a neurological difference. He directed us to resources that highlight the strengths of autistic individuals, ensuring that we view Leo as unique and not in need of fixing.
Thanks to this guidance, we’ve embraced Leo’s identity. We’ve limited therapies to those that support his interests and recognized that neurotypical appearance isn’t a goal for him. Our family understands that while we may operate differently, we share a strong bond and love for one another.
In honoring World Autism Awareness Day, we want to express our support for the autistic community without endorsing Autism Speaks.
There are alternative movements you can consider! Many advocate for the Red Instead movement, which emphasizes acceptance over awareness. Many people feel blue symbolizes loss, while red represents passion and heart.
Another option is to “Light It Up Gold.” The Au suffix has become popular in self-identification, and the #LightItUpGold campaign seeks to challenge Autism Speaks’ narrative.
Every April 2, I proudly share, “Au is the chemical symbol for gold. Gold is valuable, just like Leo! He’s AUtistic and AUsome! We don’t feel BLUE about his autism; we feel lucky to have our shining, precious boy!”
If you want to support the autistic people in your life on April 2, consider wearing red, lighting it up gold, or simply acknowledging them. However, before you “Light It Up Blue,” remember that for many, this gesture does not signify support, regardless of the rebranding efforts by Autism Speaks.
For further information on autism and how to support autistic individuals, visit the Autistic Advocacy website and check out the Autistic Women and Nonbinary Network.