Most research around autism is completed by non-Autistic (allistic) individuals. The impact of this manifests in a lot of the language used to describe Autistic people and how autism is perceived by the general population, including the diagnostic criteria and the use of the term “spectrum” to define it. The Diagnostic Statistical Manual 5th edition (DSM-V) was the first time autism was described as a spectrum in regards to formal diagnosis. This change represents that there are core attributes of autism but Autistic people have wide and varying experiences.
A big shift that Autistics are looking to bring is to have more Autistic researchers and/or Autistic people consult scientists and help guide studies to represent our needs. This shift would help improve the mainstream understanding about ASD, that it cannot and shouldn’t be rated from least to most severe. Autism is a spectrum; however, that spectrum is not a stagnant two-dimensional line. How much another person can see our challenges or Autistic attributes is not the only measure to gauge who we are and how Autistic we are.
Why Is Autism a Spectrum?
Autism is considered a spectrum because it is experienced differently by each Autistic person. The core differences in how an Autistic brain may experience, process, and interact with the world around them that constitute a diagnosis are often very nuanced characteristics that differ from person to person.
Before the 5th edition of the Diagnostic Statistical Manual was published, ASD (Autism Spectrum Disorder) was broken down into several subtypes or different diagnoses:
- Asperger’s Syndrome
- Autistic Disorder
- Kanner’s Syndrome
- Childhood Autism
- Atypical Autism
- Pervasive Development Disorder Not Otherwise Specified (PDD-NOS)
Because all of these separate labels contained attributes of Autism, they were all placed into one “disorder” or label: Autism Spectrum Disorder. With this, there were other qualifiers and co-conditions or challenges specified within the diagnosis. Without getting too technical, I want to point out that there still is a severity rating in the DSM-V: levels 1-3, going from least to most severe. This is likely where the linear view of ASD comes from and why it still shows up.
The Linear Model of ASD
This image/model shows ASD as a condition that ranges from mild to severe. It is a two-dimensional image that often focuses on an Autistic person’s challenges and visible behavioral differences from those around them. This lens fails to take the person’s internal experience into account to consider how the environment around the person and the perceived severity of their challenges can affect their ability to function.
While the linear model is simple, it is reductive in its simplicity. The “severity levels” can be useful if trying to explain support needs to a recently diagnosed person and/or their family. But most people and medical professionals are beginning to leave this model behind in favor of a more nuanced understanding.
If we are trying to demonstrate a complex spectrum of experiences that affect each individual differently in a visual sense, how can we all fit on the same line? We really can’t; our experiences are not two-dimensional, nor are they static. Being Autistic affects our experiences differently day to day or even minute to minute.
Some days being able to cook dinner can feel completely overwhelming to an Autistic person after they worked in a busy hospital that same day. Going to a social outing can be a welcomed opportunity one day and be impossible on another day. To show these differences and nuances of what being Autistic means to different people can be challenging. Wanting to self-advocate, the Autistic community has begun embracing a new model: the color wheel.
The Color Wheel: Autism Spectrum Pie Chart
The autism color wheel, also called the autism pie chart, is completely different from the linear model. Born from the Autistic community itself, the wheel breaks ASD into different attribute categories. Depending on a person's experience within the individual categories, the wheel fills in with a certain amount of color. More color in a section shows that a certain attribute is more prevalent for the person at the time they took the test.
Below are the real results of an online test (not a diagnostic tool) I took while writing this blog. The sections with less color, like aggression, indicate that I experience those attributes less, and areas like noise sensitivity with more color show the ones that I experience more:
“How autistic” would you think I am based on this graphic? You can't really tell, can you? That is the point! It shows my lived experience with ASD instead of a neat little line or category. It shows the complexity and, to me, the beauty of my Autistic brain.
A New Method of Understanding Autism
So, if you are still not sure which model is more "accurate" or "correct," you are not alone. Many individuals within the Autistic community lean towards the color wheel because it feels more inclusive and representative of what being Autistic feels like. The color wheel is also trying to leave behind the idea that the visibility (or invisibility) of Autistic attributes to others determines how Autistic someone is.
That being said, the linear model isn’t wrong in a way, especially if an Autistic person utilizes it. Just be aware of the information and history behind each model and remember that everyone is unique. If you meet one Autistic person, you have met only ONE Autistic person and cannot make any assumptions or generalizations about them or anyone else.