Why Is Autism a "Spectrum" - The Autism Color Wheel

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

This includes the diagnostic criteria and the use of the term “spectrum” to define it. The Diagnostic Statistical Manual 5th edition (DSM-V), a reference created by generally non-Autistic clinicians and researchers, was the first time autism was described as a spectrum in regards to formal diagnosis.

The term “spectrum” suggests that while there are core attributes of autism, Autistic people have wide and varying experiences. While the variation in autistic experience is a reality, the idea that all aspects of autism can be represented on a linear scale from “mild” to “severe” is rather simplistic, as any Autistic person will tell you.

Some research groups are beginning to incorporate Autistic researchers and/or to consult Autistic people to help guide studies to represent our needs. This shift should help improve the mainstream understanding of autism and reinforce 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. In addition, how another person perceives our challenges or autistic traits is not the only measure to gauge who we are and “how autistic” we are.

Let’s talk about how the autism wheel better captures the spectrum of autism and autism traits.

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 an autism 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 in discourse around ASD today.

The Linear Model of ASD

The "linear model" of the autism spectrum

This image/model shows autism as a condition that ranges from mild to severe. It is a two-dimensional image that often focuses narrowly on an Autistic person’s challenges and their visible behavioral differences from those around them. This lens fails to take the person’s internal experience into account. It also fails 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.

Creating a more truthful visual representation of what these differences and nuances of being Autistic mean 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

“I think that each test about autism should be made by Autistics so that it is as accurate as possible. I think the color wheel test was accurate in my results and so useful.” - Ben B.

The autism color wheel, also called the autism pie chart or autism wheel, is completely different from the linear model. Born from the Autistic community itself, the wheel breaks autism into different attribute categories:

Depression
Fixations
Abnormal/flat speech
Noise sensitivity
Social difficulty
Anxiety
Abnormal posture
Poor eye contact
Tics and fidgets
Aggression

Depending on a person's experience within the individual categories, the autism 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. The prevalence of each attribute can change over time for a person with autism, so there may be merit in taking it again after a few years to see if anything has changed and reflect on how those changes might have affected your life.

“Each Autistic wants help with the symptoms of their autism that are unwanted, so a color wheel is much better at showing those things than a line or levels. I've never used anything other than plain ASD to describe myself. If I want help, I just describe what I need without labeling it. But I think for a diagnostic tool that helps figure out which things might actually help an Autistic, the color wheel is far superior to both levels and lines.” - Isaiah G.

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 autistic traits less, and areas like “tics and fidgets” with more color show the ones that I experience more:

The autism spectrum depicted as a color wheel

“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. This chart indicates, for example, that I am very noise-sensitive, experience a lot of repetitive behaviors, and struggle less with social difficulty than eye contact. All in all, it shows the complexity and, to me, the beauty of my Autistic brain.

The complexity of the autism wheel also clues in allistic people to what autism actually is, which is something the linear model could never do. It gives a much more holistic (and realistic) picture of autistic traits.

A New Method of Understanding Autism

So, if you are still not sure which model is more "accurate" or "correct," you are not alone. As you can see from my fellow team members’ quotes, many individuals within the Autistic community lean towards the color wheel because it feels more inclusive and representative of what being Autistic feels like. It also helps to point out specific things that can help them to live life unmasked with the necessary accommodations.

“As a late-diagnosed Autistic, the color wheel has been really helpful for me. It helps me articulate to neurotypicals how my autism presents itself. It also helped me personally understand that we’re not a monolith, and each have our own experience of autism. It's been a tool I can return to time and again and see shifts happen as I work to spend less of my life masked." - Mary

The autism color wheel is free of the idea that the visibility (or invisibility) of Autistic attributes to others determines how Autistic someone is. It allows us to take off our masks and paint our own internal experience in bright colors.

That being said, the linear model isn’t outright wrong, 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.