I’ve been thinking about the 3 “levels” of autism, a relatively new invention, and what they mean for autistic people.
I’ve seen people discussing these levels online, and many of the ways they’re discussed don’t seem to match the reality of autism as it feels to many autistic people. I’d like to talk about how autism works for autistic people, and how people can better understand these “levels” to avoid missing the nuance and individuality you see in each autistic person.
I wrote about this on Twitter earlier and I’d like to discuss it in more detail today.
What I said on Twitter
After some internal debate, I decided to create and upload a graphic on the 3 “functional levels of autism.”
I don’t love the idea of categorizing autistic people into distinct “levels.” It has the potential to be the next functioning labels: limiting, misconceived as rigid, and a cause of bragging or despair.
I also know that non-autistics are going to talk about this stuff no matter what. They have already made graphics. Some of these graphics look awfully sad.
So here’s an autistic graphic. Mine is different:
- Internal experiences are acknowledged.
- The kids are shown relatively happy. (One has a blank expression but is content.)
- Language emphasizes respect and needs.
- It is explicitly stated that these labels aren’t rigid.
The “criteria” are imprecise, because based on my research, nobody agrees on exactly what they are. It’s subjective. It’s vague. The edges of the columns are blurred together on purpose.
The graphic also states that stress, environment, and support will impact these traits. I behave like a very different person in an office vs. at a busy grocery store. (People have treated me like I have the mind of a small child. Thanks for being nice, but I’m an adult?)
I also chose to include a graphic showing my current traits. As you can see, I have a lot of “level 1 traits” and “level 2 traits.” Where should I be categorized? Your guess is as good as mine. And that’s the point.
Is this an official diagnostic resource? No. I do not have a doctorate. This is based on some online research and lived experiences as an autistic person. It is imprecise, but that doesn’t matter, because the labels are imprecise anyway.
Do you have to love the idea of “levels of autism?” No. I don’t either. My goal is that this image can help shift the direction of the conversation. Maybe it’ll help people understand more. And maybe the art of smiling kids will help someone relax.
How do you perceive someone’s level?
I read up a bit on “levels of autism,” going past toxic memes towards reliable sources, to try to learn what experts think about it.
Nobody agrees on exactly what these levels mean. Some of the websites I saw seemed to imply that Level 1 autistics have purely social problems without anything else. (A person like that would not meet the diagnostic criteria for autism.) Some suggest that sensory processing issues are not very significant in level 1 or even level 2. If only!
There’s also the fact that a person’s autistic traits are likely to be less noticeable in a quiet office, meaning that a specialist may not see how prominent those traits can be. What I look like in a quiet room is very different from what I look like in a restaurant or on the street.
When I’m in public with nothing to fear, I am noticeably odd. I skip sideways through shopping aisles and touch all the soft textures. My voice goes unmodulated. People react to me like I am a toddler in a teenage body. Sometimes they seem a little surprised when my dad tells me things like “go get one” or “put it back” and I prance away, like they are impressed he trained me this well and thinks I can do it myself.
(This is an adult body, not a teenage body, but I’m baby-faced so I understand when people find my age confusing.)
And when I’m in front of people I need to impress, I am composed. I speak clearly and politely. I smile. I suppress the urge to rock back and forth, even though it helps me focus. I get a reputation for being very smart. They do not see the way I collapse onto my bed at night.
If someone from work saw me buying new clothes at Target, they might think I had a severely disabled identical twin.
People in public might look at me and see “level 2 autism.” People in a workplace, if they knew I’m on the spectrum, might see “mild level 1 autism.”
What is the truth? The truth is that I defy your mere mortal categories!
What I want non-autistics to know
I’m guessing that most autistic people already understand this stuff. But non-autistics might not. (Hey, I’m glad you’re reading it, then!)
These levels of autism? They’re made up. They’re fake. There are no distinct subtypes of autism, and these are just a vague shorthand.
So, please keep in mind that:
- How we act varies a lot depending on our environment. Stress, overwhelm, and how much we trust others are the big factors.
- We may act “less autistic” in a calm environment because focusing is easier. We may also do this if we think others might mistreat us if we show who we are inside; this is called “masking” and it’s severely tiring.
- We may act “more autistic” in a busy environment, if we’re overwhelmed, or if we feel comfortable enough to “unmask.”
- If you’ve only seen us in one context, keep in mind that it doesn’t represent how we always are.
- Autism is lifelong, but one’s “level of autism” is not. The right support can decrease our subjective “level.” Lack of support or major stress can increase it.
- Regardless of our behavior, start with the assumption that we’re of average intelligence and able to understand you (even if we don’t visibly react).
Autism is not like a continuum from mild to severe. It is more like a collage. Each person has a different mix of traits with different levels of intensity for each trait. And the traits are fluid, varying based on circumstance. Sometimes they fade away and sometimes they come into being.
It’s too complicated to be described as a single level.
So when someone uses this shorthand to describe a person, keep in mind that this isn’t nearly the full picture. We’re complex human beings. No label can capture all of who we are.