“Severe autism” doesn’t exist.

“Severe autism”, “mild autism”, “profound autism” — these labels were developed by non-autistic people to describe how they experienced an autistic person’s autism.

That’s all it is.

Autism doesn’t come in flavors. No one is “more” autistic than someone else. Autism doesn’t work that way.

It’s not a matter of which autistic person has autism “worse” or “better”. The autism spectrum is not about comparing people’s autism.

This is what the autism spectrum looks like:

This is my most recent result from the Autism Spectrum Test by IDR Labs.

I take the test every couple of years, and it’s always different depending on what my life is currently like.

Autistic people are going to be affected by their autism differently throughout their life. The most critical thing to understand about autistic people, as a non-autistic person, is that non-autistic people won’t be able to understand what our experience with autism is like first-hand.

If you’re not autistic, you don’t know what it’s like.

It’s the same for parents who tell me I don’t know what being a parent is like. They’re right — I only know what raising my siblings was like.

“Severe” describes co-occurring conditions

When non-autistic people know someone is autistic, they see everything that autistic person does as “autism”. Every co-occurring condition is perceived as a part of autism — er, rather a consequence.

If you’re autistic and have Tourette syndrome, your stims and tics may appear the same to non-autistic people even if you can tell the difference. My Tourette’s tics are triggered by stress and sensory sensitivities, like if my clothes or hair graze my skin in a way that makes my neck muscle twitch.

As a kid, I’d clap the rhythm clap teachers have students copy as a stim, which was perceived as part of Tourette’s.

However, to people who don’t know where autism ends and my co-occurring conditions begin, I am “severely autistic”.

I have irritable bowel syndrome (IBS), which means I can’t eat certain foods and will get really bad stomachaches after eating sometimes.

People don’t see me as an autistic person with IBS, though — they see me as “severely autistic”.

This is the same for other autistic people who have co-occurring conditions non-autistics around them ignore in favor of using “autism” as an umbrella term.

Autism is not an umbrella term. Autism only encompasses autism — period. Every co-occurring condition is that co-occurring condition. It’s not autism. It’s not “severe” autism.

IBS is IBS.

Tourette syndrome is Tourette syndrome.

Autism is autism.

Severity levels don’t exist

They’re literally made up.

I saw an Instagram post by a non-autistic mother of an autistic boy post a photo of her son surrounded by screenshots of people saying severe autism doesn’t exist.

The caption said she received documents from his pediatrician confirming his diagnosis as “Autism Severity Level 3”.

Severity levels do not exist.

I don’t care what doctors diagnose — I really don’t.

Doctors do autistic people wrong all the time by not listening to actually autistic people. The doctors creating severity levels are not autistic and don’t use any autistic input, either.

Autism severity levels is yet another case of autism functioning labels, where “low-functioning” and “high-functioning” were/are based on how non-autistic people in that autistic’s life experience that person’s autism.

The labels don’t mean anything.

The labels ignore the struggles autistic people experience and will continue to experience so long as non-autistic people continue to ignore us when we share our experiences.

Support levels

Autism support levels aren’t enough, either, because the validity of an autistic person needing certain support is still dependent on how third-parties perceive that autistic as needing support.

As long as third-parties are left to name and narrate the experience of autistic people, autistic people will continue to be

• misunderstood,
• misrepresented and
• denied the support we actually need.

Severity levels aren’t for us — they are for non-autistic people to categorize us based on their convenience, not our reality. They prioritize how autism looks to others rather than how it feels to us.

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Autistic people don’t need to fit into neat, little boxes. No label will ever capture the full depth of our experiences.

The only way to truly understand autism is to listen to autistic people — without conditions, without assumptions, without the need to sort us into categories that serve everyone but us.

Nothing about us without us.