April 25, 2024 | FEATURES | By Kole Petersen
Disclaimer: This piece was originally published in the writer’s high school newspaper. It has been updated and re-edited to be fitted for this column in The Catalyst.
As April concludes soon, Autism Acceptance Month comes to an end. I am feeling incredibly grateful to have the platform I do today writing for The Catalyst. My pieces focusing on disability advocacy have been noticed by far more people than I ever could have imagined, and my messages of neurodivergent love have been accepted to a degree I never could have expected. However, my work will never be fully complete. There is still a wide variety of organizations that actively harm the prosperity and status of autistic people like me, the most egregious of which is Autism Speaks.
The following piece is an unedited reprint of an article about the horrors of this organization written by myself in 2022 for my high school’s newspaper. I still wholly stand by the primary message contained within: accept autism, this month, and all months.
Millions of people across the world will celebrate Autism Acceptance Month by adorning themselves with puzzle pieces and hanging blue lights in front of their houses as a sign of “solidarity” with the autistic community.
However, as a person with autism, these actions are the worst things anyone can possibly do to support the autistic community due to the company behind the puzzle pieces: Autism Speaks.
It may seem strange to criticize a company whose stated purpose is to promote understanding of autistic people and advance research on intervention for autism spectrum disorder, yet the realities behind this organization’s goals instead harm the futures and global perspectives of autistic people across the world.
To fully understand the reasons behind avoiding the “Light It Up Blue” campaign, it is important to understand the history and activities of the company behind it. Autism Speaks Inc. was founded by Bob and Suzanne Wright on February 11, 2005, a year after learning of their grandson Christian’s autism diagnosis. Autism Speaks was built upon the legacies of three preexisting autism organizations, those being the Autism Coalition for Research and Education, the National Alliance for Autism Research and Cure Autism Now (the latter of which influenced some of the organization’s perspectives discussed later in this piece). Currently, Autism Speaks is the largest and most well-known autism advocacy charity and autism research organization in the United States, and their primary mission (according to their website) is the “promoting [of] solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families.”
However, this mission statement is contradicted by their actions; just 35% of Autism Speaks’ budget is allocated to researching these solutions, and only a small percentage of that is delegated to improving the quality of life of autistic people. Despite the company’s proposed goal of supporting the lives of autistic people and their families, only 4% of their annual budget is spent towards “family services.”
While it is technically a “non-profit” organization, the meaning of this is that the company’s profits are reinvested back into the organization, leading Autism Speaks to have the highest rates of executive pay in the world of autistic organizations; Angela Geiger, the former CEO of the company, made an eye-watering $642,000 in 2018 alone. Additionally, only two members of its Board of Directors are actually autistic, signifying the fact that they make decisions regarding autistic people without including the autistic community. This is in stark contrast with organizations such as the Autism Self Advocacy Network, which has a larger number of autistic self-advocates on its staff.
These egregious transgressions already put Autism Speaks in a negative light, but their unethical, fearful marketing campaigns cement the company as a danger to the livelihoods of autistic people across the world. They utilize damaging fundraising tactics consisting of prejudicial, stigmatized views on the autistic population, especially those relating to the viewpoint that autism is a disease that needs to be cured. Autism Speaks’ marketing strategies devalue the lives of autistic people and communicate the idea that autistic individuals are subhuman entities rather than individual people who deserve to be accepted for who they are.
One of their most infamous yet abhorrent advertisements showcases a mother contemplating running their car off the road to kill their autistic child, claiming that this is a “normal” viewpoint of parents with autistic children. While Autism Speaks removed the word “cure” from its official mission statement in 2016, one of the main motivations behind its initial and continued operations revolved around the goal of curing autism instead of allowing those with autism to have the highest quality of life possible.
While it is evident that Autism Speaks is potentially one of the most harmful autism advocacy organizations, is it necessarily a bad thing to be a part of their “Light It Up Blue” campaign?
Putting up blue lights (a highly recognizable symbol of “autism awareness”) will draw people’s attention to autism, which is always a good thing, right?
Well, in reality, the “Light It Up Blue” campaign primarily brings awareness to Autism Speaks itself, rather than the autistic community, allowing the company to continue projecting its damaging ideas on how to treat autistic people without consulting the individuals they are advocating for. Furthermore, the blanket statement of the campaign to bring awareness to autism itself is incredibly vague. If awareness is the goal, we have certainly accomplished it. Awareness simply involves telling people about autism, and the thousands of news headlines, publicity stunts, and social media posts that have been posted since the launch of this campaign have certainly allowed people across the globe to learn what the definition of autism is.
However, at this point, awareness is simply not enough; what the autistic community truly needs is acceptance. Instead of posting on Instagram about autism and wearing blue on April 2, I feel that it is important to educate people about the proper ways to integrate autistic people in local communities into daily life. I say, put yourself in the shoes of autistic people and walk a mile of their journey. In other words, inform yourself about the social, psychological, and physical struggles that people with autism face every day, spread that information to others, and use this knowledge to more effectively accept and interact with autistic people. It is not solely the job of autistic people to force themselves to interact with and mask themselves to meet the demands of neurotypicals; it’s a two-way street.
So, for the remainder of this April, I highly encourage you to ditch the blue lights, forget about the puzzle pieces, and make it a priority to work towards an increased acceptance of autistic people within your community throughout your life to ensure the improved well-being of the autistic population as a whole. Reject the falsified proposals of Autism Speaks and listen to the voices of autistic people instead. Happy Autism Acceptance Month!