April is Autism Awareness month. The Camp Sunshine community is seeking to deepen our understanding of disability. This month, our Program Manager Mariah Sadenwater helps us take a closer look at Autism and its broad spectrum at Camp Sunshine and in the world.
I believe it’s important to learn about Autism because we should all have foundational knowledge and language to better understand someone else’s lived experience. Many people in the Sunshine community have Autism, but they all experience it differently and each brings individual strengths and needs to our community. By having foundational knowledge about what Autism as a diagnosis means, we can better learn the intricacies of each individual experience.
Autism is one of many neurodivergence that is a wide spectrum, so every Autistic person will experience their Autism differently. Now, when we think of a spectrum we often think of a linear path blending two opposing ends together (like the color spectrum). The Autism Spectrum looks more like the image shared here.
Each Autistic person will have varying levels within each of these categories.
This wheel has been an important shift over the last few years because it helps those of us without Autism to better understand and move away from harmful binaries like “low-functioning” and “high-functioning.”
Instead, this wheel helps display what areas of support a person with Autism might need and what areas they already have the necessary skills. At Camp Sunshine, one of our goals is to educate our volunteers about showing respect and dignity to all people with disabilities. A large step in showing respect is to use appropriate and accurate language to discuss disability. With a better understanding of the Autism spectrum, we are able to shift our language away from harm and instead in the direction of dignity.
While many people will be diagnosed with Autism as students, people can be diagnosed well into adulthood or even never receive a diagnosis. There are many different views on diagnosis and if they’re necessary. In school, a diagnosis can open up access to accommodations.
However, outside of a school setting many adults learn to navigate the world without a diagnosis by making accommodations for themselves or advocating for what they need. An example of this could be an Autistic person wearing earbuds (connected to music or not) at their desk at work to help manage the daily office noise. Another example could be wearing tinted glasses indoors to dim the brightness of fluorescent lights. Diagnosis can be a very helpful tool in providing language for what a person is experiencing, but not having a diagnosis doesn’t make a person’s experience any less valid than someone with a diagnosis.
A common debate that pops up during the month of April as people discuss Autism Awareness is the language surrounding Autism: Identity First or Person First. This is a discussion that requires a high level of nuance, and we know that the voices of the disability community should be at the center of it. Here, we’ve provided some context and resources to consider.
Language that is used to categorize and discuss the disability community has changed monumentally over the last 100 years, alongside the general public opinion and treatment of the community. For example, in the 1930’s words like “feeble-minded” and “socially inadequate” were regularly used while disabled children were often whisked away to specialized facilities.
Later, in the 1960’s, the “R-word” was a common categorization of disability. The disability community became vocal advocates against using this and similar terms because of the harm they cause, and thankfully they have, by and large, been removed from common vernacular. While it may take effort to change our language, at Camp Sunshine, we strive to continually educate ourselves and volunteers because when we know better, we do better.
Identity First Language is the practice of putting the identity marker first in the sequence of a sentence. For example: “Autistic person” rather than “person with Autism.” This is most commonly seen, used, and advocated for by the Autistic community and Deaf community because they believe their diagnosis fundamentally shapes how they see and navigate the world. This is not a blanket statement or belief, it’s best to ask people what they prefer and listen to their specific desires. For more information read The Significance of Semantics: Person-First Language: Why It Matters by Lydia Brown.
The goal of Person First Language is to avoid language that dehumanizes or stigmatizes people. Person First Language is still commonly seen as best practice when writing about people who have defined diseases, like “children with epilepsy” or “adults with diabetes”. It is also best when writing about people with mental health disorders, such as “people with anxiety” or “women with bipolar disorder.” From my experience, using Person First Language is still widely accepted and isn’t offensive but it may have unintended consequences. For more information read People First Language by Kathie Snow.
At Camp Sunshine, it is our desire to continue to listen to and learn from disability advocates. We strive to continue adapting alongside the disability community, and we’re committed to training our volunteers with the most up-to-date mindset, as our culture shifts into a new understanding of disability. It’s truly a case of knowing better and doing more.
For more information about our ongoing work on understanding disability, click here to read other posts.