Many people don’t realize how their words impact others, especially when young adults are trying to shape themselves. Words can be harmful. This is especially true with autistic people. A multitude of people think that Autism Speaks is a fantastic organization that shares autistic folks’ stories and actually cares about autistic people. Well, that is where the debating starts. Some people feel that this organization is, in fact, a godsend and they truly help autistic people; however there are others, typically ones who are autistic themselves, who think the organization is completely horrible and should not be in existence.
Autism Speaks created a puzzle piece logo that reflects the mysteries and complexities of autism. There are different colors in the puzzle piece, along with different shapes, that stand for the diversity of those living with autism. All the colors in the puzzle piece are very bright and vibrant and that stands for hope. Autism Speaks’ goal is to promote solutions across the autism spectrum for the needs of “people with autism.” The majority of autistic folks completely disagree with the puzzle piece symbol. They feel the symbol is not only childish but is wrongfully representing the autistic community as a whole. The puzzle piece is seen as something missing from autistic people, and the vast majority of autistic people disagree that there is anything missing. They feel they’re just different. The autisitc community felt so strongly about the puzzle piece design, that a new design was created to share the proper acceptance about autism. This design is called The Butterfly. Very similar bright colors were used to make The Butterfly, but in the form of an infinity symbol that makes the autistic community feel like the right amount of diversity is being represented. Not only does this symbol represent the autistic community, but it represents all neurodivergent people everywhere. When the new symbol was created, the Autism Speaks organization decided to not use the new symbol, and they stuck with their conservative logo. This has sparked even more debate about the actual awareness that Autism Speaks claims to promote.
There are other problems that autistic people face with Autism Speaks. Autism Speaks makes $69 million per year and the CEO of the Autism Speaks organization makes $600,000 in a year. This organization doesn’t put much back into the autistic community itself, less than one percent. A lot of the donated money, besides going to the CEO, goes towards their harmful fundraising. This fundraising uses fear to get the audience to feel compelled to donate. They also use stereotypes of autistic people in their campaigns and don’t disclose how wide of a range the community truly is. Many adults have autism, yet they have no idea because to get tested for autism costs over $2,000, out of pocket. This is leading for many folks to self-diagnose themselves, which is not going to really get those people anywhere, besides some self-comfort. Another problem is that Autism Speaks doesn’t listen to actual autistic people. The autistic community feel they should not be called “people with autism” because autism is not a disease, but it is just a difference from neurotypicals. Autism Speaks promotes for the families of the autistic individual to come forward about their own experiences, but that isn’t being done for the autistic person themselves. This leads to many problems where parents feel that it is okay for them to share their child having a tantrum on social media. This is super harmful to the autistic person because it is sharing such a vulnerable moment, with people online, without their consent. It can be hard to be a parent of someone who is autistic, but that does not give anyone the right to share their struggles with lots of strangers on the internet. None of these issues are discussed or talked about at all, and that is where the problem lies.
The autistic community needs bystanders to support them and how they feel about Autism Speaks. When referring to the community, one needs to say “autistic person” not “person with autism.” Another way to be supportive is to use the new symbol and not the old puzzle piece. When dealing with an autistic person, do not make yourself the victim when it is their problem, not yours. Actually listen to your autistic friends and family; even if they are non-verbal, they still communicate! Do not support Autism Speaks, and don’t wear blue for autism. You can wear red instead and be more accepting of the differences neurodivergent folk bring.