April 2 marks World Autism Awareness Day, a day established by the United Nations in 2007 and prominently promoted by Autism Speaks, a major non-profit organization claiming to advocate for autism. Their “Light It Up Blue” initiative encourages individuals to change their social media profile pictures to blue, express support for autistic individuals, and contribute financially to Autism Speaks.
While this initiative sounds positive and well-intentioned, it’s crucial to recognize that Autism Speaks is not universally embraced by the autism community. Many autistic individuals express a sentiment akin to, “Autism Speaks does not represent me.”
If you’re considering participating in the “Light It Up Blue” campaign, I’m not here to criticize your choice. Like many parents, I was first introduced to Autism Speaks before my child’s diagnosis. I thought their blue color and puzzle piece symbol were widely accepted representations of autism.
However, I quickly learned that this is not the case.
Understanding the Criticism
There are numerous reasons why many autistic individuals distance themselves from Autism Speaks. The organization has faced extensive criticism over the years for its portrayal of autism as a tragedy and its tendency to prioritize the experiences of “autism parents” over those of autistic individuals. Although they have made strides in rebranding, their history is marked by actions that many in the autistic community find objectionable.
I want to emphasize that many autistic voices are critical of Autism Speaks. Some even label it a hate group. The intention here is not to sway your opinion but to make you aware of the significant opposition the organization faces from within the community it claims to represent.
Voices from the Autistic Community
Instead of speaking for autistic individuals, I encourage you to take the time to seek out their perspectives and experiences. Here are some insights from autistic adults regarding Autism Speaks:
- Amy Sequenzia, in an article on the Autistic Women and Nonbinary Network’s website, states, “Autism Speaks reaches out to families by highlighting deficits and presenting autism as a burden.”
- Cassandra Crosman, on her blog In The Loop About Neurodiversity, adds, “The blue color associated with Autism Speaks perpetuates harmful stereotypes, making it challenging for women and nonbinary individuals to receive proper diagnoses.”
- Donnie Denome, writing for The Student Life, shares, “I don’t trust Autism Speaks or similar organizations that view disabled people as burdens to their families.”
These perspectives resonate with me as a parent of a five-year-old named Max, who has been diagnosed with autism spectrum disorder since he was nearly three. From the very beginning, we were advised by a developmental pediatrician to be cautious of Autism Speaks. He emphasized that their focus on finding a “cure” frames autism as a disease rather than a neurological variation. He encouraged us to embrace Max’s uniqueness and support him in ways that celebrate his individuality.
In our home, we choose to embrace Max’s identity. We limit therapies to those that align with his interests and recognize that being neurotypical is not a goal for him.
Celebrating World Autism Awareness Day
To show our support for Max and the autistic community on April 2, we prefer to acknowledge World Autism Awareness Day in ways that do not endorse Autism Speaks.
There are alternatives! The Red Instead movement promotes acceptance instead of awareness. According to Learnfromautistics.com, “Blue is often seen as a symbol of sorrow, while red represents passion and heart.” The #RedInstead campaign aims to shift the focus towards acceptance and understanding rather than a search for a cure.
Another option is to “Light It Up Gold.” The Au suffix has become a common self-identification within the autistic community, leading to the #LightItUpGold movement as a response to Autism Speaks. It symbolizes the value of autistic individuals.
In our family, we proudly celebrate April 2 with the message: “Au is the chemical symbol for gold. Gold is precious, just like Max! He’s AUtistic and AUsome! We don’t feel BLUE about his autism; we’re grateful for our shining boy!”
If you wish to celebrate the autistic people in your life on April 2, consider wearing red, lighting it up gold, or simply giving them a shout-out.
Before you “Light It Up Blue,” it’s essential to understand that for many in the community, this expression of support may not resonate positively, regardless of how Autism Speaks presents its mission.
For more comprehensive insights into autism and how to support autistic individuals, visit Autistic Advocacy and Autistic Women and Nonbinary Network.
Summary
As World Autism Awareness Day approaches, consider the implications of supporting Autism Speaks’ “Light It Up Blue” campaign. Many autistic individuals feel that the organization does not represent their voices. Instead, explore alternatives like the Red Instead movement or Light It Up Gold, which promote acceptance and understanding of autism.
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