World Autism Month is celebrated throughout April to help people around the globe become more educated about autistic individuals and help better understand them. This month is significant to me as an autistic person, but it’s also become mentally exhausting for me recently.

When I was 11-years-old and in the sixth grade, my mother revealed to me something she had known since I was three years old: I was autistic. After I was bullied for taking jokes literally due to how my brain processes information, my class had a lesson about autism in April, which was the first step to understanding my identity. After taking time to study autism for many years, I’ve grown to love myself and learned that just because I handle life differently from others, that doesn’t make me any less of a person. World Autism Month is important to me, but the month and what it stands for isn’t perfect.

As a child, Autism Speaks was the only autism organization I was familiar with. Undoubtedly, it is one of the more popular charities that have educated the public about what autism is. The organization has been promoting World Autism Month for many years now, and I’ve grown accustomed to seeing the puzzle piece symbol. The puzzle represents my diagnosis, which was a missing part that I needed in my life to understand who I am and why some of my life experiences happened the way they did. Seeing multiple puzzle pieces made me think about the autistic community coming together like a puzzle to help the rest of the world understand us more. As much as I love the symbol, there’s no denying that Autism Speaks has harmed the autistic community for several years.

Autism Speaks has a long, problematic history that started when it was founded in 2005. The organization was initially created by Bob and Suzanne Wright to find a cure for their autistic grandchild, Christian Wright. Just two years later, the charity hired John Elder Robinson, who was their first autistic employee. Although Autism Speaks claims to advocate for and support autistic individuals, they refused to let Robinson make any public remarks on behalf of their organization. 

Instead, the organization allowed its non-autistic employees to publish offensive material, including an article written by co-founder Suzanne Wright in Nov. 2013 called “A Call to Action.”  Wright wrote that autism caused people’s families to “split up, go broke, and struggle through their days and years.” Their controversial 2009 PSA, “I am Autism, ” used this rhetoric,” where autism was personified as a monster.

“I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to attend a temple, a birthday party easily, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism,” Billy Mann wrote for the PSA.

Although Autism Speaks encourages the employment of autistic individuals, the damage has already been done. Within the same month that Wright’s article was published, Robinson decided to resign. In 2019, he wrote a chapter called “My Time With Autism Speaks,” featured in the 2020 book “Autistic Community and the Neurodiversity Movement,” which was about the experiences of neurodivergent advocates and how they tried to help the autistic community while researching the diagnosis. 

“It embarrassed me to be associated with them, but at the time, they were the largest private funder of autism research in the USA, and I thought my impact there might be more impactful than at a smaller organization,” Robison wrote about Autism Speaks in his chapter of the book. 

Robinson also criticized the organization for its use of funding and the lack of support for the autistic community.

“When I looked at the research Autism Speaks was funding, I saw next to nothing that had potential to resolve the problems I saw among autistics,” Robison wrote. 

Autism Speaks’ 2018 990 Non-Profit Tax Exemption Form furthered this argument by revealing that only one percent of the funding they received that year was allocated to services to help families who have autistic relatives. In contrast, a whopping 48 percent is used for marketing. 

Autism Speaks been shown to be an untrustworthy organization that doesn’t help the community they claim to represent. The organization is a prime example of the idea that just because something is popular doesn’t mean it’s beneficial. Many members of the autistic community have created a counter-movement to Autism Speaks called #redinstead. The hashtag is a variance to the organization’s blue theme. Although I’m team #redinstead regarding being against Autism Speaks, I believe every autistic person has the choice to use any color or symbol they want, especially during a month when they should take pride in the way they express their identity.