Why does the autism community reject the puzzle piece and autism speaks charity

by Dyspraxia Magazine May 9, 2023

First and foremost, this magazine is owned by an autistic woman and supporting panel members, many of whom identify with autism and other neurodivergencies, such as ADHD, dyspraxia etc. The voices of the neurodivergent community will always come first, and our views align with the wider autistic community. We consider it important to share those views and help others understand the reasons behind them. So why does the community reject the puzzle symbol and Autism Speaks charity?

The autistic community has been increasingly vocal about its opposition to the organisation known as Autism Speaks, which claims to advocate and support autistic individuals and their families. However, many autistic individuals and their allies argue that the organization's actions and rhetoric perpetuate harmful stereotypes and contribute to the marginalization of autistic people.

The primary criticism of Autism Speaks is that it is led predominantly by non-autistic individuals or "neurotypicals." The organization claims to want to represent autistic individuals but does not have a single person diagnosed with autism on their board of directors. This lack of representation means that the organization is not properly informed about the needs and concerns of the autistic community.

Furthermore, Autism Speaks has a history of using adversarial language when speaking about autism. The organization has been criticized for depicting autism as a disease and framing it as something that needs to be cured. The autistic community, on the other hand, sees autism as a natural variation of human neurodiversity and opposes any efforts to "cure" or eradicate it.

One of the most harmful campaigns run by Autism Speaks was their “I Am Autism” campaign in 2009. This campaign portrayed autism as a devastating disease that destroys families and steals children’s lives. It was full of scare tactics and misinformation that served only to stigmatize people on the autism spectrum. The video depicted autism as a monster that had to be eradicated at any cost. These claims of autism being a disease or something that needs to be cured completely strips away the identity of autistic individuals and portrays them as less than human. This type of stigma can have a profound impact on the mental health of autistic people as they may believe they are inferior which can lead to further societal mistreatment and exclusion.

Additionally, the organization’s “Light it up Blue” campaign that runs every April has been criticized for being harmful to autistic people. This campaign aims to spread “awareness” about autism by encouraging people to wear blue throughout April. However, many autistic people feel that this campaign is not about awareness at all, but is instead about promoting Autism Speaks and its mission. Many autistic people argue that this campaign marginalizes and discredits the autistic community by reinforcing harmful stereotypes about autism. The reason for using the colour blue is also due to a long running misconception that autism is most common in boys, however this has since been disproven many times.

As well as this, autistic people feel that Autism Speaks has not done enough to advocate for the rights of autistic individuals and have instead focused primarily on research and awareness. We touch more on this if you read on.

These campaigns by Autism Speaks have been harmful to autistic people because they perpetuate harmful stereotypes and stigmatization against autism. They portray autism as a disease or disorder that needs to be eradicated, and do not acknowledge the unique strengths and abilities of autistic people and focus on the vast spectrum and needs of each individual. They also further the idea that the goal should be to cure autism, rather than to celebrate diversity and promote acceptance.

Why don't we support the puzzle piece symbol?

Many autistic individuals and advocates believe that the puzzle piece represents the idea that autism is a puzzling and mysterious condition that needs to be solved or fixed. The puzzle piece symbol is often referred to as a 'hate symbol' for autism due to the harm the campaigns and messages portrayed by Autism Speaks have caused by using the puzzle piece as their logo and campaign symbols.

Many people still refuse to stop using the puzzle piece and will go to extreme lengths to defend their right to us it. In doing so many have threatened autistic individuals and are not shy to name call, dox and bully those who try to educate them on why they should not use it. We stand with the autistic community in echoing that the puzzle piece will always be in association with autism speaks, regardless of whether or not the person using it thinks so.

Instead, many individuals prefer the use of the infinity symbol or a rainbow-colored neurodiversity symbol to represent autism in a more positive and accepting way. The infinity symbol highlights the ever changing spectrum that is autism.

Another point of contention is the use of advertising by Autism Speaks that juxtaposes the lives of individuals with autism to that of their neurotypical peers. These types of campaigns push even more harmful stereotypes that portrays autistic individuals as a burden to society, and incapable of feeling happiness or love. These messages are deeply harmful for autistic people who struggle to make sense of a world that often seems hostile and unaccommodating to their needs.

Finally, the distribution of Autism Speaks' funds is also a contentious issue. While Autism Speaks has a considerable budget (disappointingly many of Autism Speaks sponsors are well known famous people), much of the money goes towards research into the causes and potential cures for autism, rather than addressing the needs of autistic individuals and their families. Many in the autistic community feel that addressing pressing issues such as education, accessibility, and employment is a more pressing matter than pursuing cures.

Autism Speaks has been the subject of a significant backlash from the autistic community for several reasons, including a lack of representation of autistic individuals within their organization, adversarial rhetoric concerning autism, harmful advertising, and a disproportionate donation towards research instead of addressing more pressing needs. The autistic community encourages advocates of the autism community cause to seek out organisations that prioritize the autistic individuals' needs and wants, and promote autism acceptance rather than eradication.

There are many autism organizations that provide a positive view on autism and promote neurodiversity, including:

Autistic Self Advocacy Network (ASAN)
Autism Women's Network (AWN)
National Autism Association
Autism National Committee (AUTCOM)
Autistic People of Color Fund (APCF)

These organizations focus on empowerment, acceptance, and understanding of autism as a natural variation of human diversity, rather than a disease that needs to be cured or eradicated.