Musings, Neurodiversity

Why I Don’t Like to Tell People I was DIAGNOSED WITH Autism

These are my own opinions and reflections. I know others may and do feel differently and at no point do I judge, belittle, or put down anyone for how they deal with or think about the subject of this post. I may also feel differently in the future. This is all a learning process.

I was diagnosed with autism and inattentive ADHD in November 2020.

Almost immediately after I found this out, I realized I hated saying that sentence, especially the “diagnosed with” part. I am still getting used to, “I am autistic,” but through those words, I feel a sense of pride and relief: they help me know myself more fully. “Diagnosed with” never sat well, and as time goes on, it’s sitting worse and worse and worse.

Why?

Let’s deal first with the word diagnose. What does it imply? Disease. Ill health. Failing organs. Shortened lifespan. And, sometimes, an accompanying cure.

I know this word has been important in the history of autism and our understanding of it. Pathologizing neurodiversity as a disease has been historically necessary in order to get autistic children legal access to any form of education, let alone accommodation once actually in the classroom, and to get autistic adults accommodations in the workplace. But it’s wildly stigmatizing.

Pathologizing neurodiversity has pathologized entire ways of being. For many neurodiverse (ND) people, this has led to damaging and traumatic experiences, as neurotypical (NT) people around them sought to cure them out of behaviors, traits, and tendencies that did not fit within arbitrarily and culturally defined categories of what they deemed “socially acceptable.”

What NDs need is not diagnosis and cure, but empathy and acceptance from their NT peers. The anxiety and depression most NDs (including me) struggle with is in large part due to our attempts to interact with a society that does not understand us or our brains, and seems to have no use for us or interest in us.

Societal education is needed, across the board, in workplaces and schools and religious institutions and grocery stores and banks and in public transit… This should be simple. But there is no switch to flip for a better society. And, unfortunately, there are NT people out there (like the musician Sia) who are willing to benefit financially from perpetuating stereotypical and harmful interpretations of autism for mainstream audiences, many of whom may not have other interactions with autism.

But, as the wonderfully empathetic Mr. Rogers once said, there are always helpers. There are many amazing advocates and ND people hard at work right now with the goal of societal education in mind, some of whom have been working since before I was born. As a writer, choosing my language is one way to contribute, a way to fight back against pathologization, and to fight for a more enlightened, caring, and openly diverse population.

Now for the word with.

With is a preposition, a part of speech that expresses relation between a noun and something else in the clause. As I tell the students I tutor, prepositions are hard. I’d also add that they’re important.

For example:

There is nothing wrong with me.

But there is something different about me.

About me is identity. “Let me tell you about her,” implies that the speaker is going to describe the person in question. With me is in addition to, alongside, accompanying. Autism, ADHD–neurodiversity–is not accompanying me, as cancer cells do someone with Leukemia. Neurodiversity is me. It doesn’t impede my functionality; it describes it.

In the right setting, my neurodiversity is an asset. In the wrong setting, it’s not.

Which brings up another, darker layer to all of this though, involving internalized ableism.

For those who might not have come across the term, Merriam-Webster defines ableism as “discrimination or prejudice against individuals with disabilities.” It’s essentially the incorrect concept that people with disabilities are lesser.

When ableism is internalized, just like when racism is internalized, ableist thought becomes part of the structure of our minds. We can act in ableist ways without realizing what we’re doing. Even if that means we’re being ableist toward ourselves.

There is a possibility that I may have an aversion to the phrase “diagnosed with” because I have unresolved internalized ableism, which I am experiencing here as resistance to applying that phrase to myself.

But I also don’t feel totally comfortable with the term “disabled.” Again, this could be internalized ableism telling me “disabilities = bad” and so I try to distance myself. The facts of the matter are: I have to approach tasks and situations differently than NT people might. I have difficulties with social interactions and in relationships. I have a low energy level and I have trouble regulating my emotions. I struggle with anxiety and depression as a result of being in a culture that doesn’t seem to understand or value me, or what I need to thrive. The very reason I sought assessment in the first place was because I was feeling disabled.

I clearly still have a lot of thinking and processing and learning and growing to do around all of this. But I wanted to write this essay anyway, to capture the evolution of my thoughts, to be transparent, to show what it looks like to realize you’re autistic in an anti-autistic society, and, selfishly, to help myself process by writing and thinking about all of this.

Words matter. The way we talk about our differences matters.

For now, this is how I’m choosing to talk about mine. Rather than saying, “I was diagnosed with autism,” I say,

I’m neurodiverse. For me, that means I’m autistic, ADHD, and HSP.

And, I suppose, if anyone expresses surprise or doubt, I can pull out the old, “I was evaluated and met assessment criteria for” card, but I’d like to do as much as possible to de-stigmatize and de-pathologize a way of being, even if I have to do it one word at a time.

If you have thoughts on this topic, please share in the comments! I’d love to have dialogue with you all about this, whether this is all brand new to you, or if this is something you’ve thought about already. I’m completely open to learning and growing and changing my mind.

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