April is Autism Awareness Month. The designation of the month to bring awareness to autism is very controversial, as the organizations that participate in this month are rife with ableism. If you are unfamiliar with the term, ableism is the discrimination and social prejudice of society against people with disabilities. Many people with autism would rather the month be focused on acceptance more so than awareness. Autism Speaks, a widely known non-profit, is closely affiliated with Autism Awareness Month. It is disliked by the autistic community for multiple reasons, mainly that it does not accurately represent or serve the majority of autistic people, therefore failing in its purpose as a non-profit. It targets caretakers and parents of autistic people, and as a result treats actual autistic people as unable to contribute to conversations about their disorder. In order to combat some of the misinformation spread during Autism Awareness Month, we have complied information about what autism is, and how to avoid being ableist it your everyday interactions.
What is Autism?
Autism is a neurodevelopmental disorder, meaning it effects how a person’s nervous system develops. Because their neurology is different, autistic people experience the world differently, and this is part of the reason many people see being autistic as an indivisible part of who they are. An important part of autism diagnosis is the idea of a “spectrum”, with one side representing a person traditionally considered “low-functioning”, meaning that they have severe trouble communicating, issues with social interaction, and a low IQ (which does not necessarily correlate to intelligence), and the other side representing someone considered “high-functioning”, meaning someone who speaks “acceptably”, can “pass” while socializing, and has a high IQ. Many autistic people have issues with the terminology associated with the spectrum, specifically labeling people as high or low functioning. It is considered oversimplified, and contributes to stigma around autistic people.
There are many characteristics of autism, however as everyone is different, these characteristics may present differently or not at all. Below we have listed some of the characteristics an autistic person may present with.
- Problems Understanding Tone/Inflection
- People on the spectrum may have trouble picking up nuances in a person’s tone while speaking. This, combined with the tendency to take everything literally, can cause mixed messages to be communicated.
- Sensory Processing Differences
- Due to the neurological aspect of autism, autistic people interpret the world differently than someone without autism. This can effect all senses, but most commonly affects sight and sound. Things that may not seem all that loud and bright to a non-autistic person can be very overwhelming to someone with autism due to their neurological differences.
- Stimming
- Stimming, or self-stimulating, is the process of repeating motions or vocalizations in order to self-regulate or self-soothe. There is some discussion as to whether stimming should be trained out of people with controversial therapy methods such as ABA (applied behavioral analysis), but since stimming can be extremely beneficial and is not shown to be harmful, many autistic people see this as an attempt to force people to hide their autism, therefore hiding and being ashamed of a part of themselves.
- Following a Routine
- Many people who fall on the spectrum are also diagnosed with anxiety. Maintaining a routine is a way to add order and structure to an otherwise uncontrollable world. Every person’s flexibility with their routine is different, as no two people are identical.
- Eye Contact
- Generally, autistic people have trouble making eye contact. It can feel unnatural, uncomfortable, and in some cases aggressive. Many people come up with coping methods to appear as though they are making eye contact, such as looking at someone’s eyebrows. There is debate around forcing autistic people to make eye contact, as it is less about helping the autistic person and more about making them acceptable for society.
- Navigating Unspoken Rules
- This falls along the same vein as problems with picking up tone and inflection. There are many unspoken rules about social interaction, such as personal space and acceptable topic conversations, that non-autistic people pick up subconsciously. However, for an autistic person, they may not recognize the rules and unconsciously break them.
Common Myths About Autism
There is a lot of misinformation about autistic people, and what is means to be autistic. Below is a list of common myths about autism.
- Autistic People Have No Empathy
- This is a multifaceted accusation, and does not look at all sides of what it means to be autistic. First of all, empathy is not the ability to care about people. Simply, empathy is the ability to “step in someone else’s shoes” and understand what they are feeling. The inability of an autistic person to do this harks back to their struggle to accurately look at a person and understand what they are thinking or feeling through body language or tone of voice. In fact, newer theories speculate that autistic people are overly empathetic, meaning that the issue they have is not relating to others, but instead being unable to place exactly what a person is feeling through body language and tone of voice. Like everyone, empathy levels vary regardless of a person’s placement on the spectrum, making their inability to feel empathy a myth.
- Autistic People are Violent
- Very simply, there is no evidence to suggest that an autistic person is more prone to premeditated violence that anyone else. In fact, autistic people are far more likely to be the victim of bullying and emotional/ physical abuse by parents or caregivers than other children.
- There is an Autism Epidemic
- While there is an increase in the amount of people being diagnosed, this is considered a result of an improvement in diagnosis as opposed to an increase in the autistic population. The term autism has only been around for a short time, and for the majority of its existence, the criteria for being diagnosed was very strict. As you have learned from this post, no two people present the characteristics of autism in the same way, making many autistic people fall outside of the antiquated criteria for diagnosis. In addition, when looking at the overall population of autistic people, there is around the same number of autistic adults as there are children, meaning there has not been an increase in the overall rate of autism, just improved diagnosis.
- Vaccines Cause Autism
- This is a very controversial issue, not just in the autism community but in mainstream media as well. It is an issue that many parents (not so much autistic adults or medical professionals) in the autism community are very passionate about. However, it is not true. Vaccines do not cause autism, and not vaccinating your child can leave them susceptible to many dangerous diseases.
- All Autistic People Want to be Cured
- This is incorrect, and a highly offensive statement to many members of the autistic community. As their most basic neurodevelopment is different than a non-autistic person’s, people with autism often see their disorder as being an indivisible part of themselves, and not something that needs curing or fixing.
How to Avoid Being Ableist
If you are someone who is unfamiliar with the autism community, or generally uneducated on autism or other disorders and disabilities, you may be participating in ableist language. We have included some common phrases people say to autistic or disabled people, and why they are ableist.
- “You’re so Inspirational”
- This implies to autistic and disabled people they are inspiring for living, as if being disabled or autistic is so bad it is a miracle they can continue to go on with their lives. This sends really negative messages about what you think of their lives.
- “You Don’t Look Disabled/Autistic”
- This is often said to people with “invisible disabilities”, such as neurological differences or chronic pain. This invalidates the person’s experience, and insinuates that the only real disabilities are ones you can see.
- “Stop Complaining, Other People Have It Worse”
- Just because there are things that are worse doesn’t mean that what someone is going through isn’t bad, painful, or hard. One person’s pain does not invalidate someone else’s. This is like saying “Stop being happy, other people have it better”. Just because other people are happy doesn’t mean someone else can’t be as well.
- “If You Just Tried Harder, You’d Get Better”
- First of all, autism isn’t something to “get better” from. It is apart of someone, and not something that needs to be cured or fixed. Secondly, there is not a magic cure for things like depression or anxiety, two common comorbid disorders. It is incredibly insulting to insinuate that what someone is going through is completely in their control, and that they are not trying hard enough to get better.
- “Try To Act More Normal”
- This implies that there is something wrong with the way an autistic or disabled person is. Some things autistic people do may make others uncomfortable, like stimming in public or needing to wear earplugs or sunglasses inside, but there is nothing wrong about it, and there is no reason to need to change to act mo9re “normal”
- “You’re Not a Disabled Person, You’re a Person With a Disability”
- There are a few things wrong with this statement. First of all, telling somewhat how to identify is called tone-policing. It is not for anyone other that the person themselves to decide what they are or are not. Many people prefer identity-first language such as “autistic person”, as they feel it conveys that being autistic is an important part of who they are and their identity . The other option, which is still widely used, is called person-first language, and signals that the person and the disability or disorder are separate.
Sources Used
Below are a list of sources used to write this post. This blog is only the tip of the iceberg, and if you feel the desire to learn more about autism and ableism feel free to check out the links below. A special thank you to sisters Caley and Creigh of Autism Spectrum Explained. This website is a great resource to educate yourself about multiple facets of autism and the community.
Links
https://adayinourshoes.com/ableist-ableism/
15 Common Phrases That Are Way More Ableist Than You May Realize
https://www.theodysseyonline.com/7-reasons-not-support-autism-speaks
http://www.autismacceptancemonth.com/what-is-autism/
https://www.identityfirstautistic.org/what-is-ableism-
https://www.cnn.com/2012/12/17/health/connecticut-shooting-autism/index.html
http://www.autistichoya.com/2012/07/georgetown-say-no-to-autism-speaks.html
https://www.autismspectrumexplained.com/our-blog/vaccines-and-autism
https://www.autismspectrumexplained.com
Click to access MedicalComorbiditiesinASD2013.pdf
http://neurowonderful.tumblr.com/autismmasterpost