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Disability is a spectrum, not a monolith

Organizing and categorizing things can be very helpful. This comes in handy when you’re learning new information in a class, or when you need to label your boxes when you move.

Oftentimes, we even categorize people in binary ways. This is natural for our primate brains, who needed to quickly assess if something was either a threat (sabretooth tiger) or not a threat (raspberries) in order to survive. As we’ve developed, we continue to try to label things in binary categories to make it easy for our brains to understand and store information. However, humans are rarely ever that simple. People don’t fit into neat boxes, including disabled people.

In order for our brains to categorize different types of disabilities, we have too often simplified our understanding of what those disabilities entail. It’s time to expand our knowledge and learn more about the nuances that each disability presents. Are you interested in learning more with me?

Learning about Nuance

Something that I learned recently is that blindness is a spectrum. While there is a distinction between blind and sighted, there are also a variety of ways blindness can manifest. People can lose their vision in different parts of the eye, such as central or peripheral, or they could have vision that would seem blurry or fuzzy to a sighted person.

If you would like visual demonstrations of what this looks like to a sighted person, here is a 5 minute TedTALK by Andrew Leland, who is someone who is progressively going blind.

An image of Andrew Leland giving his TedTALK. He is wearing black rimmed glasses and a collared yellow shirt with three buttons going down. He is by a plate of pears. He has a professional but friendly expression on his face.
Photo Courtesy: TED

Outside of what I’ve learned about over the internet, I’ve had some experiences in real life that expanded my knowledge around disability. I also used to think in binary terms when it came to being either hearing or being Deaf.

In college, I met someone who is hard of hearing. While she could communicate verbally, she also had difficulty hearing words if there were too many background noises. Even the range that someone who is hard of hearing (HoH) can detect can vary from person to person. Some people who are HoH will learn sign language, some will use assistive devices, and some may not have tried either. Each person who is HoH can determine what supports they need to be able to participate in society.

The Complications of Categories

Every two years, I become a big sports fan for the Olympics and Paralympics. I will dedicate every available moment to watching any event that’s on tv. I will follow the athletes on Instagram. I also plan to volunteer for the 2028 Olympics when they come to LA in 2028!

Needless to say, I’ve listened to several announcers for the Paralympics talk about how the games are structured. Paralympics are divided into different groups based on the types of disabilities athletes have, and how severely the disability impacts the athlete. While this was made to level the playing field, sometimes complications arise when athletes are divided into categories.

Brenna Huckaby is a Paralympic snowboarder who won two gold medals at the 2018 games in Pyeongchang. She was training to compete for the next games when she was told that there weren’t enough competitors in her category. While her ability to participate was initially denied, Brenna advocated for herself to be allowed to compete in the next category “up” at the Beijing 2022 Paralympics. She proved her athleticism once again by collecting another gold medal and a bronze medal to add to her collection.

An image of snowboarder Brenna Huckaby. She has her prosthetic leg up in the air and she is holding onto it. She is holding her snowboard with her other hand. She is wearing a floral top and smiling at the camera.
Photo Courtesy: InRegister

This story highlights when categorizing by disability severity can be tricky. The categories that are supposed to give athletes opportunities to compete almost prevented Brenna from being able to contend. Stories like Brenna’s should be considered by the Paralympic committee, as it is their responsibility to make the games as fair as possible.  I hope that the Paralympic committee can be flexible when needed in order for all athletes to be able to compete against the best of the best on the world stage.

Isn’t Autism a Spectrum?

Now, at this point, you may be thinking, yes, it’s great to know more about the diverse experiences of those with disabilities, but what does this have to do with autism specifically?

Well, autism has been called a spectrum condition. During the diagnostic process, the psychologist will assign a category to their client depending on how much the psychologist thinks autism impacts the person. Those diagnosed with level 1 are thought to need minimal accommodations, while those with level 3 would require significant support. This linear view also carries over into our society’s current conception of autism, where people are labelled as either “high-functioning” or “low-functioning.”

However, this terminology can lead to misconceptions that prevent people from receiving the types of support they need. Those who are considered to be on the “higher” end of the spectrum are often dismissed as just weird or quirky. There is this idea that autism does not impact their lives and that they don’t really need accommodations. Those who are deemed to be on the “lower” end of the spectrum often have skills that go uncultivated because the person’s abilities are underestimated.

Additionally, the level that one person is diagnosed as may actually change for that person depending on their life circumstances. Someone who was categorized as Level 1, needing minimal support, may end up in a period of burnout that requires them to have substantial support during that time. (This is also a situation many undiagnosed autistics find themselves in). This would involve a loved one or an personal support person providing care for daily living tasks, such as getting showered, dressed, and fed.

On the other hand, those who were placed in level 3, requiring substantial support, may need assistant with daily living tasks and may also use other forms of communication that is not speech. Just because someone was assigned level 3 during their diagnosis does not mean that they also posses capabilities, skills, and talents.

Over these past 5 years, our Autism Stories podcast has hosted several guests who are non-speaking. They have communicated about their academic and social experiences as well as their interests, such as painting and poetry. The way they discuss their experiences are just a prolific, if not more so, than autistics who use verbal speech to communicate. I think this shows that having been diagnosis of level 3 autism does not mean that someone cannot be a strong communicator, a deep thinker, or an artist.

The Autism Wheel

If the spectrum may not be an accurate way to represent the autistic experience, then what else could we use? This is where the Autism Color Wheel may come in handy. The Autism Color Wheel is divided up into sections corresponding to autistic traits. Each trait has several lines in it. Each person can fill out the sections of the wheel according to how much each trait affects their lives.

Take me, for example. I do not need much help with speech or motor skills, so I am towards the center of the circle for these traits. I could use more assistance with sensory processing, so I would be closer to the outside of the circle.

The Autism Color Wheel is helpful because it takes somewhat arbitrary categories and breaks them up into tangible experiences. It focuses on what skills someone has, and what areas they may want or need more support in. Personally, I find this to be a helpful tool to use that can give me more insight into myself and others, without having to prescribe an arbitrary level.

We Don't Need Boxes

Just like other disabilities, autism can present in a variety of ways that may not always fit neatly into overarching subdivisions. While trying to understand how one’s disability impacts them, it can lead to creating arbitrary categories that may lead to confusion or division in the disability community. Even though there is a range of experiences for each disability, we all belong to the disability community.

It can be helpful for those who support us to learn about the specific traits and ways one’s disability affects their life in order to provide the best support. If you are looking to support a loved one who is autistic, you can learn more about our coaching here. If you are autistic and would like to learn more about your autistic experiences or how to find your autistic community, our life coaches are excited to help you take those next steps.

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