Content note: child death.

I was once asked, “what’s a misconception people have when they look at you, as an autistic AAC user? What do they not see?”

Honestly, I could’ve answered with many things – and I generally respond with my advocacy scripts that I’ve carefully crafted over time. Things like “not seeing my autonomy” or “not presuming competence” are usually among the basics.

But today, I’m straying off the script.

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The things that people miss the most?

How intensely I experience and feel things, and how I can’t always express that in everyday conversation.

There’s this false sense of expectation that you must have speech to convey emotions.
Of course, that’s not true. Speech is not a requirement for the observation of life.
I find life beautiful, despite often struggling to want it for myself. Seeing others living different lives, many stories I’ll never know of; I always wonder about the people I pass every day, hoping they’re doing okay.

I remember seeing it best described in a show I once watched, where life was compared to a candle – each flame being unique and how they can’t be replaced once extinguished.

I think about that often.

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And yet – five years ago on this past September 17th, one of the most beloved flames went out when we lost my baby brother. Autistic, nonspeaking, also a fan of planes and music – just like me. He had even finally started to use his communication device to share all about his love of Legos.

He was only 7.

I’ve posted about him before, and I’m sure I will again.
Sometimes I feel like a broken record, a skipping CD that you can’t seem to repair no matter how many times you clean it. I worry about making others sad, but then again – part of me fears that if I cease to mention him, he might be forgotten. My mind wanders, contemplating how his death might’ve been prevented by the medical system – if they hadn’t dismissed and sent him home.

Was it a lack of awareness? Little training about autism? Not taking concerns seriously? All three?

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When you’re an AAC user (or even autistic in general), people often assume you aren’t affected by things or that it doesn’t impact you – especially if you react in a way that they don’t “expect”.

Autistic people often process trauma differently – sometimes by being very quiet, loudly stimming, seeking connection any way they can, being angry, or even laughing. It can be hard to control our body’s expressions overall, but especially during a heightened emotional state.

Grief is confusing like that.

Like I’ve said before, it doesn’t have a singular look. It’s a complex and tangled mess of emotions, regardless of your neurotype. Grief is hard to navigate, and comes overwhelmingly in waves.
And when it happens, it’s hard for anyone to communicate such a strong emotion.

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