April is Autism Acceptance Month. The month is dedicated to understanding, accepting, and empowering autistic people worldwide, however there is a common misunderstanding among allies and the community about the reliability of autism advocacy charities, specifically Autism Speaks.

Autism Speaks Inc. is an autism “advocacy” charity and the largest autism research organization in the United States. It sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public. It was founded in February 2005 by Bob Wright, vice chairman of General Electric, and his wife Suzanne, a year after their grandson Christian was diagnosed as autistic.

The main issue the autistic community finds with the advocacy program is its portrayal of autistic people and the distribution of the money collected by the charity. Autism Speaks uses its platform and its advertising to portray autism and autistic people as mysterious and frightening, creating a stigma and barriers for the inclusion of autistic individuals while only donating about 4% of money to autistic people.

This can be seen on their mission page on the Autism Speaks website, “Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. ” At first glance, readers will see this as an empowering and wonderful message but looking closely at the language used, the cracks begin to appear.

The use of first-person language, “person with autism” instead of identity first language, “autistic person,” has often been debated by allistics, also known as non-autistic individuals, and autistics. The usage of first-person language insinuates that autism is a disease or a thing someone carries instead of an integral part of their life. This switch in language to identity first has been begged by the community with lack luster results.

With more in-depth research on their website, it came to light that there had only been one board of the directors which was autistic, even though the charity is meant to “improve” autistic people’s lives.  This means all the decisions for the future generation of autistic people are being made by allistics and that the organization is one of the rare organizations without a member who is a part of the minority group.

John Elder Robinson was the first and only autistic person who was involved with the higher up events and research of Autism Speaks. He even mentions this in his book Autistic Community and the Neurodiversity Movement, stating, “In December of 2007, University of Washington child psychologist Geraldine Dawson was named Chief Science Officer of Autism Speaks. After reading my book she sought my input on the direction of autism science. I became the first autistic person to advise Autism Speaks on research to serve autistic people.”

Throughout his time in the charity program, Robinson noticed the lack of money and resources genuinely used to benefit autistic people, with most of the money being used for genetics research and “cures.” This is backed up by Autism Speaks Non-profit Tax exemption form which indicates 35% is used for research, 23% for fundraising and 33% from Media Awareness and Lobbying.

Autism Speak also pushes the use of the color blue. The usage of the color blue is highly discouraged as the color was created by the advocacy which historically emphasizes on a cure, has disproportionate funds allocated to research and marketing vs. helping autistic individuals and their families throughout their lifespans, and lack autistic leadership.

In retaliation, the community has been urging allies to use the color red to display support to the autistic community. While the original instigator of the color is unknown, the usage of red instead of blue can be seen on March 19th, 2015, with the main charities following this being Autistic Self Advocacy Network and Autism Women’s & Nonbinary Network.

The Autistic Self Advocacy Network is a nonprofit advocacy organization run by and for individuals on the autism spectrum while advocating for the inclusion of autistic people in decisions that affect them. Autism Women’s & Nonbinary Newtork is similar as it is a nonprofit advocacy organization in the autism rights and neurodiversity movements based in Washington, D.C. with a focus on empowering and supporting autistic women and nonbinary transgender people.

The reason for the opposing color red is that it is as contrasting color to the Light It Up Blue campaign. Many autistics dislike using the color blue to represent autism because of what it traditionally symbolizes. The color blue is sometimes used to represent males and emphasizes the gender stereotypes associated with autism, preventing the representation of non-man autistics. Blue is also generally the color of disappointment and depression hinting at a negative tone while, red is the color of love, ambition, and respect.