It's cool to talk too much...

when describing your autistic child

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This newsletter rests at the intersection of the unserious ramblings of a woman full of buttered rice and dad jokes and the somewhat sophisticated stories and essays of someone who knows just enough “smart” words to sound super intelligent and insightful.

What will today’s newsletter be? Hmm…

When people speak of my son, the words they use are a mosaic of “severe,” “low functioning,” “profound.” Each term is a different lens on the same picture, offering a view that is fragmented and narrow. They speak with urgency, as if the right set of descriptors might summon some form of change or understanding. Yet, these words—just words—fail to bridge the gap between what is seen and what is lived.

To me, this is a waste of language. They scatter words like seeds hoping for a harvest that never comes. The language they choose is meant to invoke a reaction or a shift, but it remains static, failing to capture the essence of the person it describes. They burn energy on labels that do nothing more than confine and categorize, as though each term could somehow simplify the complexity of my son’s existence.

A phrase often used is “in his own world.” It implies a separation as if my son were alien, as if his breath did not mingle with theirs, as if his presence were not palpable. They describe him as if he were absent from the physical space, when in reality, his senses and focus are tuned differently, but he is here—fully present. He engages with the world in ways that are unique, but not disconnected.

He is not removed from this world. He simply interacts with it differently, focusing on elements and sensations that others might overlook. This does not mean he is absent; it means his experience is distinct. The distance they create with their language only serves to reveal their unwillingness to understand his perspective.

I see how this language creates barriers. It’s a distancing tactic, a way to keep the complexity of human experience at bay. It is not about showing the “real side of autism”; it’s about perpetuating a one-dimensional view that does not fully encompass the human experience.

Using more words, deeper words, allows for a fuller picture. It means describing my son not just through his challenges but through his entire being—his emotions, his strengths, his intricacies. It means sharing a narrative that humanizes him, that honors his presence in this world.

The real challenge is not just acknowledging his struggles but also celebrating the breadth of his existence. The Neurodiversity movement has its strengths but often fails to address the needs of families like ours. I understand why people use these terms; I once did, speaking of myself as if I were distant from the world around me. But understanding my son’s reality requires more than shorthand descriptions. It requires an expansive vocabulary that captures not just the struggle, but the entirety of his experience.

So, I use more words. I speak of my son with the complexity he deserves, not reducing him to mere labels or struggles. He is here, present, and richly woven into the fabric of this world. In sharing our story, I aim to connect with others, to foster understanding that transcends simplistic categorizations and honors the depth of what it means to be human.