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Misrepresentation of the Autistic Community in the Media

Mental health issues became a taboo topic in our society- shedding light on some of the biggest misrepresentations of the Autistic Community by some of the most trusted organizations.

By Kaylee Smith | April 7th, 2021


In an world where technology has become an extension to humans, where we turn to tv shows, movies and social media to form our biases- a falsification or misrepresentation has the power to influence the opinions of millions.

Autism is something that most neuro-typical people don't typically understand and it's probably because of poor media exposure. In today's world, the media continues to incorrectly portray people with autism. Since many people don't interact with people with autism they trust the media for their frame of reference. With Sia's new movie Music, the puzzle piece symbol, and the organization Autism Speaks misrepresenting the autistic community, it gives neuro-typical people a wrong idea about the community.


Autism Speaks is one of the biggest organizations ‘advocating’ for autistic people but they are doing more harm than good. They have been pointed out to fear monger, look to end autism, and don't actually have members with autism. Which is pretty hard to dispute since Autism Speaks has come out with a commercial which personifies autism and explains it as something taking over your children.


In the commercial entitled “I am autism” the narrator continues to blame autism for ruining children and the lives of families. Saying things like “I hover around all of your homes, I know no colour barrier, no religion, no morality, no currency. I speak your language fluently and with every voice I take away I require a new language. I work very quickly.” This quote is at the beginning of a three minute video, it is sending the message of fear and shame. According to this video, if you have autism it is an issue, you are being overtaken by an evil force; conversely, if you don't have autism then you should be afraid of people that do, and be afraid of your children having it. The video doesn’t only focus on how autism ‘spreads’ but also blames it for completely unrelated issues such as when they say, “If you're happily married, I will make sure that your marriage fails.” Another very disturbing line from the commercial, clearly stating that autism or having an autistic child or partner is the reason for the downfall of a relationship. Saying things like that is detrimental to the mental health and image of people with autism.


It is no wonder that Autism Speaks misrepresents autism as they have no autistic members on their board. According to Kaylene George (an autistic self-advocate) there was once a member with autism added to the board named John Elder Robinson. However, he quit because he was shown no respect. John Robinson quoted co-founder Suzanne Wright saying that she said there was an "autism crisis” and that “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism.” Thus proving that the disrespect and misrepresentation is rooted at the head of the organization. This also goes to show that if the organization was built on ideals like this it was never meant to be helpful, only spread propaganda and to raise money to ‘fix’ the “autism crisis.”

Autism Speaks spends 39% of their money on the “awareness” mentioned earlier and only 4% goes to the actual families with autistic members. They do, however, use 32% to conduct research. This research includes finding the cause of autism, expanding services across lifespan, lowering the diagnosis age under to 2 years old, and enhancing medical treatments. If they are able to find the cause and narrow down how autism is caused and different diagnoses through the DNA, parents will be able to find out if their child is autistic before it is born. Then this will become similar to how Down syndrome is seen in children early. Parents may not want to have the child anymore because they know they will be hard to raise, thus lowering the population of autistic people. However, they say that their research is also focused on helping to cure the other health concerns and to help intervene earlier with counsellors to help the children develop.


Sia recently released a new movie entitled “Music” which follows a young non-verbal autistic dancer. The first red flag is that the character is being played by the verbal, non-autistic Maddie Zeigler. Apparently there was supposed to be an autistic girl playing the lead but it was apparently it was too “unpleasant and stressful” for her, which is red flag number two. If the set is “unpleasant and stressful” for the actor to work in then it probably isn't a good representation of the community. They also happened to be partnered with Autism Speaks, except Autism Speaks denies being involved in the casting process and says that “Autistic actors should always be given the opportunity to play autistic characters.” Sia started to respond to the comments she was getting, "thirteen neuroatypical people, three trans folk, and not as f---ing prostitutes or drug addicts but as doctors, nurses and singers. F---ing sad nobody’s even seen the dang movie. My heart has always been in the right place." When she quickly started to get frustrated with the concern from people that the movie was damaging and going to send a harmful image of the autistic community, tweeting, “Grrrrrrrrrr. F--- it f--- why don’t you watch my film before you judge it? FURY.”


Joseph Stanichar from Paste Magazine said that Maddie went for a “mimicry” approach to the role which made it unnatural and not an honest portrayal of how the person would act. Joseph also mentions the restraint scenes in the film which picture Zeigler’s character in the midst of a breakdown and her family members restrain her and put force on her back to calm her down. When in reality, that type of restraint is only to be done by a trained professional and as a last resort. These scenes are so disturbing that they are triggering people in the autistic community. It was so disturbing that Sia had to apologize, promising to take the scenes out of the movie. Joseph states that this “cements the fact that she did not listen to autistic audiences or experts throughout the film’s production.”


There are many other problems with the movie. These are just the most prominent ones that have been pointed out. The movie has created many problems for the autistic community, including the misrepresentation, the triggering scenes, and the lack of representation in the casting and crew.


The puzzle piece has been the adopted symbol for autism for a very long time thanks to Autism Speaks who adopted and popularized it. The puzzle piece was originally used by the Autism Society and was meant to represent the complexity of autism, which is exactly the reason people don't like the symbol. Autistic people see the puzzle piece as offensive since it represents how autism is thought to be puzzling or a mystery. People with autism do not want to be related to an unsolved mystery as if they should just be avoided.

Since the symbol was popularized by Autism Speaks, there arises another issue. Autism Speaks has proven to be a very untrustworthy organization, so this symbol being associated with them makes this so much worse. The symbol should bring power and comfort to the community it is representing; instead, this tears them down. It has become a sign to autistic people to mistrust organizations who use it because they must not have good representation if they're still using the symbol.


The media has not been a place that is good for autistic representation and even in recent years it has continued to show that there is not enough consultation with the community they're trying to portray. Autism Speaks is a damaging organization, but somehow seems to be the most popular; Sia’s movie is promoting a bad image of autistic people and triggering them; last, the puzzle piece is still being used because there is insufficient awareness about it’s offensive beginnings. So, before we can actually begin to help a community we have to learn from them, to understand the truth and how to actually be a good ally.





“The Autism Awareness Ribbon.” Autism Society, www.autism-society.org/about-the-autism-society/history/autism-awareness- ribbon/#:~:text=The puzzle ribbon was adopted,universal sign of autism awareness.&text=The Autism Awareness Ribbon — The,families living with the condition.

Hand, Dr. Brittany, et al. “Research.” Autism Speaks, www.autismspeaks.org/research#:~:text=MSSNG provides autism researchers with,and its associated health conditions.

Kaylene. “Why I Do Not Support Autism Speaks.” Autistic Mama, 29 Mar. 2020, autisticmama.com/do-not-support-autism-speaks/.

Nick Romano. November 20, and Nick Romano. “Sia Responds to Backlash after Casting Maddie Ziegler as Autistic Teen in Film 'Music'.” EW.com, ew.com/movies/sia-music-movie-autism-controversy/.

“Noted Self-Advocate Cuts Ties With Autism Speaks.” Disability Scoop, 19 Nov. 2013, www.disabilityscoop.com/2013/11/14/noted- cuts-ties- autism-speaks/18893/.

Stanichar, Joseph. “Sia's Music Is a Painful, Thoughtless Film That Uses Autism as a Prop.” Pastemagazine.com, Paste Magazine, 11 Feb. 2021, www.pastemagazine.com/movies/sia/music-review/#:~:text=Since Sia has admitted that,these segments as the culprit.&text=One of Music's most visibly uncomfortable elements is Ziegler's lead performance.says:, Altogether Autism, and Altogether Autism. “Autism No Puzzle, Nothing Wrong with Us.” Altogether Autism, 26 May 2019, www.altogetherautism.org.nz/autism-no-puzzle-nothing-wrong-with- us/#:~:text=To autistic people, the puzzle,the past referring to autism

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