As April 2 approaches, we recognize World Autism Awareness Day, established by the UN in 2007. The day is heavily promoted by Autism Speaks, a prominent non-profit organization that claims to advocate for autism awareness. Their “Light It Up Blue” initiative encourages people to change their social media profile pictures to blue, express their support for the autistic individuals in their lives, and contribute financially to the organization.
While these actions seem positive, it’s crucial to understand that Autism Speaks is not as universally embraced as many might think. Many autistic individuals feel that “Autism Speaks doesn’t represent me.” If you choose to support Autism Speaks and participate in the “Light It Up Blue” campaign, I’m not here to judge you.
Before my son was diagnosed, Autism Speaks was the only autism organization I was aware of. I assumed their blue color and puzzle piece symbol were widely accepted representations of autism. However, I later discovered that this is far from the truth.
Numerous autistic individuals have voiced their concerns regarding Autism Speaks. The organization has faced criticism for portraying autism as tragic and focusing on the experiences of “autism parents” rather than the voices of autistic people. While they have attempted to rebrand and make changes, their past actions have left many feeling alienated.
I am not here to dissuade you from supporting Autism Speaks; instead, I want to inform you that many autistic individuals do not stand behind them. Some even label the organization a hate group. You are free to form your own opinion about this.
As a non-autistic parent, I will not speak for the autistic community. Instead, I encourage you to seek out firsthand accounts from autistic individuals. To help you get started, here are some powerful quotes from autistic adults about their views on Autism Speaks.
In an article on the Autistic Women and Nonbinary Network, writer Mia Johnson states, “Autism Speaks focuses on deficits and difficulties, portraying autism as a burden rather than a difference.” On her blog, Neurodiversity Now, author Linda Parker shares, “The blue color associated with Autism Speaks perpetuates stereotypes, making it harder for those outside the traditional narrative to receive a diagnosis.” In a piece for Campus Life, writer Sarah Thompson argues, “I can’t support organizations that treat disabled individuals as burdens on their families.”
This topic is personal to me because of my son, Ethan. He was diagnosed with autism at the age of three but has been a vibrant part of our lives since before birth. A developmental pediatrician advised us to be cautious with Autism Speaks, highlighting that their focus on finding a “cure” could cast autism in a negative light. We were encouraged to view Ethan as unique and to accommodate his needs without seeing him as flawed.
Thanks to this guidance, we prioritize allowing Ethan to be himself. We limit therapies to those that align with his interests, such as art and music. Our family often discusses how Ethan is like a unique device in a family of computers; we communicate and connect in different ways, yet we are all equally valuable.
To acknowledge World Autism Awareness Day without endorsing Autism Speaks, consider alternatives. Some advocates support the Red Instead movement, which emphasizes acceptance over awareness. According to Learnfromautistics.com, “Red symbolizes passion and heart, contrasting with blue’s associations of sorrow.” The #RedInstead initiative encourages understanding and accommodation rather than focusing on a supposed need for a cure.
Another option is to “Light It Up Gold.” The Au suffix, representing gold, has been embraced by the autistic community and symbolizes value. Each year, we celebrate by posting, “Gold represents value, just like Ethan! We celebrate his uniqueness and shine brightly for Autism Acceptance Day!”
If you wish to express your support for autistic individuals on April 2, consider wearing red, lighting it up gold, or simply acknowledging their presence. Remember that for many, “Lighting It Up Blue” may not feel like genuine support, despite Autism Speaks’ attempts to reframe their image.
For more information on autism and how to support autistic individuals, check out resources like the Autistic Advocacy Network and the Autistic Women and Nonbinary Network. You might also find valuable information about home insemination and pregnancy at Make a Mom or visit the CDC for further insights on reproductive health.
Summary
Before participating in “Light It Up Blue” for Autism Awareness Day, consider the perspectives of many autistic individuals who feel that Autism Speaks does not represent them. Explore alternative movements like #RedInstead and Light It Up Gold that emphasize acceptance and value the unique experiences of autistic people.
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