April 2 marks World Autism Awareness Day, a date established by the United Nations in 2007 and widely recognized through campaigns like “Light It Up Blue,” promoted by Autism Speaks, a significant non-profit organization that claims to advocate for autism. This initiative encourages people to change their social media profile pictures to blue and express their support for autistic individuals while donating to Autism Speaks.
While these gestures may seem positive, it’s crucial to understand that Autism Speaks is not universally supported within the autistic community. Many autistic individuals feel that Autism Speaks does not represent their views. It’s worth noting that before my own child was diagnosed with autism, Autism Speaks was the only organization I was aware of. I assumed its blue branding and puzzle piece symbols were widely accepted representations of autism.
However, I’ve come to realize that this is far from the truth. There are numerous reasons why many autistic individuals distance themselves from Autism Speaks, and while the organization has attempted to rebrand, its past actions have left a lasting impact. Many believe that Autism Speaks perpetuates a narrative of autism as a tragedy and prioritizes the experiences of “autism parents” over those of autistic individuals.
I encourage you to explore this topic further and listen to the voices of autistic adults. Here are a few insights from them:
- Jamie Thompson, in an article from the Autistic Coalition, mentions that “Autism Speaks focuses on deficits and portrays autistic children as burdens, which misrepresents our truth.”
- Sarah Morgan, on her blog, The Neurodiverse Voice, states, “The blue light symbolizes a stereotype that autism is primarily a male condition, which further marginalizes women and non-binary individuals in the diagnosis process.”
- Alex Rivera, in another piece, writes, “I find it hard to support organizations that frame autistic people as needing fixing rather than embracing our differences.”
This topic is particularly important to me because of my son, Leo. Diagnosed with autism at a young age, Leo has always been a cherished part of our family. When we received his diagnosis, our pediatrician cautioned us about Autism Speaks’ portrayal of autism, advising us to seek out information that respects neurodiversity.
With support from our community, we’ve embraced Leo’s uniqueness. We focus on therapies that foster his interests, ensuring he feels valued just as he is. My older child explains it this way: “Our family is like a group of computers, but Leo is our favorite tablet. We’re all smart, and though we function differently, we still connect deeply.”
To honor World Autism Awareness Day without supporting Autism Speaks, consider alternative movements. The #RedInstead initiative promotes acceptance over awareness, suggesting that red represents passion and heart, while blue often symbolizes loss. Additionally, the “Light It Up Gold” movement highlights the value of autistic individuals, encouraging the community to see autism as a treasure rather than a burden.
In our house, we love to share: “Gold is valuable, just like Leo! He’s AUtistic and AUsome! We don’t feel BLUE about Leo’s autism; we’re thankful for our shining star!”
If you want to express your support this April 2, consider wearing red, lighting it up gold, or simply reaching out to the autistic individuals in your life with love.
For further insights on autism and how to support autistic individuals, please visit Autistic Advocacy and Autistic Women & Nonbinary Network. You can also read about other topics related to pregnancy and home insemination in this helpful blog post or check out the resources provided by Make A Mom and World Health Organization.
Summary
This article discusses the significance of World Autism Awareness Day and the complexities surrounding the “Light It Up Blue” campaign by Autism Speaks. While the campaign aims to raise awareness, many autistic individuals feel misrepresented by the organization. Alternative movements like #RedInstead and “Light It Up Gold” advocate for acceptance and appreciation of autistic individuals rather than focusing on a narrative of tragedy. The author shares personal reflections on supporting their autistic child and encourages readers to seek out diverse voices within the autistic community.
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