April 2 marks World Autism Awareness Day, a date established by the UN in 2007 and heavily promoted by Autism Speaks, a prominent non-profit organization that claims to advocate for autism. Their “Light It Up Blue” initiative encourages individuals to frame their social media profiles in blue, express support for autistic individuals, and contribute financially to Autism Speaks.
While these actions may seem positive, it’s crucial to understand that Autism Speaks is not universally embraced by the autistic community. Many autistic individuals express a strong sentiment: “Autism Speaks doesn’t represent me.”
If you choose to support Autism Speaks and partake in their “Light It Up Blue” campaign, I’m not here to criticize you. Before my son was diagnosed, Autism Speaks was the only autism organization I was familiar with, and I assumed their blue and puzzle piece symbols were widely accepted.
However, I have since discovered that this is not the case. Many autistic individuals have voiced their concerns about Autism Speaks for a variety of reasons. While the organization has attempted to rebrand and claims to be making progress, it has a long history of framing autism as a tragedy and prioritizing the experiences of “autism parents” over the voices of autistic individuals themselves.
I am not here to sway your opinion on Autism Speaks; rather, I want to highlight that a significant number of autistic people do not support them, with some even labeling them a hate group. The choice is yours to make.
Since I am not autistic, I won’t speak on behalf of the autistic community. Instead, I encourage you to take the time to learn from autistic individuals themselves. Here are a few direct quotes from autistic adults about Autism Speaks:
In a piece on the Autistic Women and Nonbinary Network’s website, writer Jamie Collins states, “Autism Speaks reaches out to families by listing the deficits, difficulties and ‘pain’ an Autistic child will experience ‘forever’; Autism Speaks creates videos that portray autism as the cause of all the world’s problems.”
On her blog, In The Loop About Neurodiversity, author Sarah Johnson notes, “Autistic people also dislike the color blue used by Autism Speaks, as it promotes the false stereotype that autism is ‘more common in boys,’ making it harder for women and nonbinary individuals to receive a diagnosis.”
In an opinion piece for The Student Observer, writer Alex Carter asserts, “I don’t trust Autism Speaks or similar organizations that treat disabled individuals as burdens. I have no time for groups that see me as a parasite on my neurotypical family members.”
This topic resonates deeply with me because of my son, Max. Max, who is five years old and was diagnosed with Autism Spectrum Disorder (ASD) just before his third birthday, has always been unique. From the moment I saw him on the ultrasound, I knew he was special.
When Max was diagnosed, our developmental pediatrician cautioned us about Autism Speaks. He explained that their focus on finding “a cure” casts autism in a negative light, rather than acknowledging it as a neurological difference. He recommended other sources for autism-related information and urged us to view Max as unique rather than damaged.
Thanks to his guidance, I sought out insights from autistic adults and focused on fostering Max’s interests, allowing him to embrace his true self. My older son describes it like this: “Our family is a mix of different devices, but Max is like a tablet. We all communicate differently, but we’re still connected.”
To honor our son and the broader autistic community on World Autism Awareness Day, we want to acknowledge the day without supporting Autism Speaks.
There are other ways to show your support! Some individuals participate in the Red Instead movement, which emphasizes acceptance rather than mere awareness. As noted on Learnfromautistics.com, “Blue is often seen as a symbol of loss and despair, while red represents fire, passion, and heart.” The #RedInstead movement encourages teaching the world how to accommodate autistic individuals rather than seeking to “cure” them.
Another option is to “Light It Up Gold.” According to AutisticUK.org, the gold color symbolizes value and has become a self-identifying mark for the autistic community. In our home, we love this idea. Each April 2, I share, “Gold is valuable, just like Max! He’s AUtistic and AUsome! We celebrate Max’s uniqueness and light it up GOLD for Autism Acceptance Day!”
If you want to express your love and support for the autistic individuals 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,” remember that for many, it may not feel supportive, regardless of how Autism Speaks presents itself. To learn more about autism and how to support autistic individuals, check out Autistic Advocacy and AWN Network.
Summary:
World Autism Awareness Day on April 2 has been promoted by Autism Speaks, but many in the autistic community do not feel represented by the organization. Critics argue that Autism Speaks has historically framed autism negatively and focused on “curing” rather than accepting autistic individuals. It is important to seek out perspectives from the autistic community and consider alternatives, such as the #RedInstead movement or “Light It Up Gold,” to show genuine support for autistic individuals.
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