How Autism Levels Disregard Medical Complexity

Many autistic adults, even those of us labeled “level 1” and thus facing possible RFK Work Farms, have more in common with children diagnosed with “level 2” and “level 3” autism than you think.

The hate mail I’m getting from White autism moms all says the same thing. And it all ignores the broader structural threats to autistic and otherwise disabled people. So this here is a post you can direct your rage toward.

Centering the Marginalized

The needs of racially minoritized autistic people are not met by creating another label (such as “profound” or, as RFK likes to say, “full blown autism”) to distance them from someone like me.

I understand that you want language to separate yourself from me. According to your hate mails, you believe I “have no right to take up space” because I “don’t know the struggle” of your daily life.

Cool.

Let’s clarify a few things

1. I have never claimed to speak for everyone or to understand your life as a parent. In fact, in my last article about the rhetorical function of the current autism discourse, there’s a full section on parental exhaustion that you’re ignoring while writing me hate mail.

2. You do not know my struggles well enough to demand that I vacate a public space. The entitlement to speak for all autistic people is staggering.

3. I am a disabled autistic educator and a social scientist. That is my professional and lived expertise. I write from personal experience, and when I apply scientific context, it’s because that is in my lane. The hate directed at me on this basis is misdirected and unwarranted.

What Autism Levels Are About

Autism is diagnosed based on specific criteria: persistent differences in social interaction and communication, alongside restricted and repetitive behaviors, sensory differences, and related traits. These must be present from early development and must significantly impact functioning. Got it.

Support levels then refer to how much assistance a person needs for these specific autistic traits, not their full medical profile, not their quality of life, not whether they can survive alone in a collapsing healthcare system.

My level 1 support needs mean I don’t require full-time, in-person support to manage autistic traits. You with me? It does not mean my life is easy. It does not mean I’m doing well. I invite you to keep reading.

Autism Co-occurring Conditions in my Case

Autism often co-occurs with other conditions. You may also see the term comorbidities used for this.These things are not part of the diagnostic criteria for autism but they certainly determine the nature of daily life, or struggle as you tend to call it.

Autistic children and grownups generally have certain other things co-occurring with autism. These things are not factored in to the autism level labeling. You with me?

In my case, these things include gross motor challenges. I also live with multiple gastrointestinal disorders, including GERD, gastroparesis, and moderate malnutrition. I also have chronic, severe migraines. Sound familiar to any of you? They should. These are common co-occurring conditions with autism.

More critically, I experience erratic and unpredictable reactions to medications. Medications that should move my body in one direction often do the opposite. Sometimes they do nothing. Occasionally, they work as expected but only once, h/t probable dysautonomia.

And you know what? This all makes managing my life-threatening cardiac and vascular conditions extraordinarily difficult.

Can someone’s cause of death be “autism level 1”? Not directly. And yet, what are my doctors supposed to even do when my bodymind does not respond to any treatment in any predictable way?

I cry at least twice a day, full on despair, at the ridiculousness of this “struggle” you assume that I know nothing about because I’m educated and I’m speaking. I do assure you that I’m autistic.

At this point, at the time of this writing, I am extremely disabled in this autistic bodymind of mine. I do require daily assistance with most tasks. I can barely walk, sit upright, or type. This is a progressive reality. And managing it is complicated because my autistic bodymind does not respond in ways that fit into standard care protocols.

The Hate Mail

So when I continue receiving hate mail telling me I “don’t even know the struggle” because I’m so educated, or that I am “taking up space” that belongs to the mom of someone else who completes one of RFK’s sentences about poems and dating, let me say this clearly: you do not know my struggle either.

And I’m not sending hate mail to your inbox. I’d appreciate it if you stopped sending it to mine.

I have more in common with your autistic children than you seem willing to admit. Your hostility is misplaced.

Many of your level 2 and level 3 kids also experience severe GI distress as I do, gross motor issues, sensory overwhelm, and medication reactions that make treatment extremely difficult. This is not foreign to me. This is my life even though I’m labeled level 1 and you’ve decided that this disqualifies me from speaking about the removal of support for autistic people.

Who Is Actually at Risk

What you also seem not to understand is that racially minoritized autistic people of all ages are at greater risk of harm, exclusion, and institutional failure than their White counterparts, including your children. (To date, 100% of the hate mail received has come from White-presenting autism moms.) That risk has escalated in the last 100 days.

It is a disturbing irony that your rage is aimed at me, while your children’s actual safety is being undermined by forces I’m also trying to fight with my writing. As an educator and a researcher, that is what I have to offer: my expertise. Seriously, I’m not your enemy. I want the best outcomes for your kids too.

The Real Enemy

The problem is not autistic people who aren’t the same as your child. The problem is a government slashing healthcare, disability services, public education, and housing while consolidating power through surveillance, incarceration, and militarization.

Your anger at all of that makes sense. That is the problem to target, not me. Your aim is off.

If I’m still alive in a year, I will not have had enough time to get over how tired I am of being used as your scapegoat.

I’m not telling you what to do. I am asking you to stop trying to hurt me.

Want to discuss this topic?

*There is this post on bluesky and this thread on facebook*