Photo Credit: Rafael Garcin (via Unsplash)
This article was written with the support and guidance of an autistic student of Memorial University of Newfoundland.
The way that autism is portrayed by the media is often not accurate and it presents a highly stereotyped and whitewashed portrayal of autism. Many of these depictions come from people and companies that claim to be supporters of autism acceptance, but do not have the best interests of the autism community in mind. This is problematic when they choose to represent autism as a children’s disorder that is undesirable and prevents “sufferers” from having a normal life. We need to do better to recognize the distinction that is presented by the autism spectrum. While some people need full-time support to navigate daily life, others need little to no support and consider their autism to be part of what makes them who they are.
Sia’s movie Music is a bold example of how autism can be negatively portrayed by the media. The film is filled with troubling and dramatic scenes, in which the autistic teen portrayed as being unable to function in society, is presented as a danger to herself and others, and is restrained by being pinned to the ground. The movie is not only misrepresentative of people on the autism spectrum, it also displays last resort methods and encourages misunderstanding of what autism is and what the experience is like for people who have it. In addition, the events portrayed in Music are hurtful and offensive, as well as being potentially scarring or triggering for a person with autism, or a friend/relative of someone with autism, to watch.
In terms of restraining a person with autism, it is an extreme last resort and is scarcely ever necessary. You should never hold down a person who is having a mental health crisis and is overstimulated or panicking. The proper procedure for helping someone who is in this state is to calmly talk them down like you would any neurotypical person and, if necessary, help them remove themselves from the distressing environment. Being physically and mentally distressed can be terrifying. Your first priority should be that person’s safety and health. Restraining a person who is asking you with for help with their actions is an extremely traumatic and unhelpful response which will cause the person to feel more alone and distressed.
Contrary to some people’s beliefs, many people with autism don’t consider themselves to be “sick” or in need of a “cure.” Not all people who have autism display physical indications that they are autistic. Many autistic people have learned throughout their lives, just as neurotypical people have, to adjust to the way their brain has developed and have learned to fill their own needs.
A student with autism, whose advice was invaluable in writing this article, told me about her own experiences with people not believing that she was autistic because she acted “too normal.” The student, who prefers to remain anonymous due to the stigma concerning autism, shared some responses that she has received from people when revealing that she has autism. These comments included “You don’t look autistic,” and “You’re too pretty to be autistic.” Comments such as these are unfortunately typical responses. They indicate a failure of our society to understand and accept autistic people as they are. If someone is sharing with you that they are autistic, it could be because they are choosing to trust you with this information, or that they want you to keep their neurodiversity in mind. It is not because they are asking for your sympathy. The autistic community is proud of their differences, which provide them with advantages as well as disadvantages compared to neurotypical people. The student I talked with views her autism as a positive aspect of her personality and an inherent part of who she is.
If you want to support autistic people, there are many charities that you can donate to. Autism Canada, The Autistic Women and Nonbinary Network and The Autistic Self-Advocacy Network are all charities that are approved by the autism community. There are, however, charities that claim to support autism, but are not run by, accepted, nor supported by autistic people. Autism Speaks is one of these so-called charities.
Autism Speaks has long been known as one of the most prominent charities concerning autism, however, their motives do not stem from a positive ideology. In addition, if you examine their website, you will notice that you will be hard-pressed to find anyone whom they employ that actually has autism themselves. There are countless claims made in their board of directors’ biographies that employees have children or adult children with autism. However, none of these “professionals” seem to have experienced autism themselves. This is the first indication that you will get that this charity may not have the best interests of autistic people in mind.
I managed to acquire Autism Speaks’ “First Concern to Action Toolkit” which is distributed to parents who are concerned that their children might have autism. This booklet panders to the fearmongering that so many parents are subjected to the minute they suspect that their child may not be developing at the same rate as other children. For example, the slogan “Learn the Signs. Act Early” from the National Center on Birth Defects and Developmental Disabilities is displayed prominently towards the end of the booklet. This slogan, as well as the majority of the instructions given to parents in this toolkit, suggest that if you catch autism early enough, you can minimize, or eliminate the effect that autism will have on your child’s life. The numerous therapies that Autism Speaks suggest you subject your autistic child to are designed to help the child “catch up” to its normally developing peers – sort of like a boot camp for children who are neurodiverse. Nowhere in Autism Speaks’ mission statements, nor in their claims to support autism do they refer to autism as a positive part of your child’s personality and diversity. Although Autism Speaks claims to focus on “increasing understanding and acceptance of people with autism” as well as their famed “intervention techniques,” they do not, at any point in this toolkit, advise parents to accept their children’s autism diagnosis.
A particularly alarming quote from the “First Concern to Action Toolkit” is the following: “Section IV: What if My Health Care Provider Says ‘Autism’?… The first time you hear “autism” will likely be a devastating moment.” Referring to autism as a “devastating” diagnosis for a parent to hear is a horrible thing for a charity that claims to support autism to say. In general, the autistic community strives for acceptance and understanding, not sympathy. Having autism is not the end of the world. Many autistic people don’t receive a formal diagnosis until adulthood. In the experience of the student with autism that I interviewed, this was because she adapted to present so well as a neurotypical person, that neither doctors nor those who knew her best could have guessed that she was autistic. A child may receive more support throughout their life if they receive an early diagnosis, however, they do not need to be “fixed” or conditioned to function as a neurotypical person. A better form of therapy would be to teach autistic children to adapt to their differences and to encourage them to accept themselves as who they are.
Another troubling aspect of Autism Speaks’ motives is that they predominantly support research that aims to discover “the genomic discovery about biology of autisms.” In the words of the autistic student who worked with me on this article: “We need solutions to integrate autistic people into society and encourage broader acceptance, not biological cures.”
Supporting autism can be a tangled web of rights and wrongs that neurotypical people may not be aware of. Just because a company, or a symbol, claims to support autism, doesn’t mean its intentions are pure and fundamentally supportive of the autistic community. Another dominant example of misrepresentation of autism and the encouragement of stigma is the puzzle piece. Puzzle pieces have been used since 1963 in association with autism, and has been adopted by the notorious Autism Speaks charity. This symbol is not accepted by the autistic community and merchandise with puzzle pieces on them are not a good way to show your support for autistic people.
The main problem with the puzzle piece is what the object implies. A single puzzle piece can be seen as indicating that this is the missing piece, in other words, autistic people are “missing” something. Puzzles are also widely considered to be children’s toys, which reinforces the inaccurate belief that autism is a children’s disorder. This is the main angle that Autism Speaks takes. They provide little to no support for adults with autism disorder, making it appear as though they consider adults who have autism to be a lost cause.
The puzzle piece depicts autism as a confusing disorder for which we need to provide a solution. An alternative to this symbol that is accepted by the autism community is the autistic pride rainbow infinity symbol which represents the autism spectrum.
The day that I am writing this article, April 2nd 2021, is Autism Acceptance Day. As the accepted alternative to Autism Awareness Day that is advocated by the Autism Speaks Charity, today is an occasion to let our neurodiverse neighbours know that we accept and appreciate them as they are and we value the differences that make them who they are. Though you may be tempted to “Light it Up Blue” or join in other pseudo-supportive acts that are endorsed by unaccepted charities such as Autism Speaks, I encourage you to pay attention to the autistic community. Try showing your support by wearing “Red Instead”. If you really want to support autistic people and show your acceptance, go directly to the source. An autistic person will let you know what their individual beliefs are and what they appreciate most in terms of support.