Autistic people are VERY good at recognizing patterns. We use patterns to build our world, similar to a writer constructing a script from archetypes. For a writer, if an archetype changes its behavior, even in the most minute of ways, the premise falls apart. Hell, imagine if The Hero archetype subtly changed? The amount of stories that depend on The Hero is formidable, and they would all be impacted. If an archetype breaks, the scaffolding breaks, the writers fret, and they need to review and rewrite their stories. But a story is one entity, while the autistic brain is not just detecting a single pattern but a complex web of patterns and systems at all times—how our bodies feel, our daily schedule, how interactions felt. Many times, an autistic meltdown occurs when a pattern shifts, and the person must scramble to reassess everything in real-time. Add to that rejection-sensitive dysphoria, and to be quite honest, it’s a miracle when an autistic person survives their day without panic.
My daughter started gen ed this year. It has been a stressful disaster because her patterns had to be rebuilt, and she is not taking it well. Every week, we get at least two calls about her behavior, and I feel helpless. She acts like a child three years younger, which means she can't lean on me and tell me her troubles. I know in my heart and mind that she is scared because school changed with no warning. It wasn’t a minute change, either—it was a major one. Changes that require the rewriting of the “school script." I think back to the times when even a friend's subtle change in vocal tone was enough to put me on guard, and I can understand where she is coming from. If even recalling small changes felt like an icy spear to my heart, then for her, it must be exponentially more disconcerting.
The hard part is that this experience is difficult to articulate to people outside of hypersensitivity to patterns. Subtle shifts in life pop out to me in technicolor intensity, as if the change itself were major. Sometimes I wish I weren’t noticing anything at all, instead of everything at once. It's like trying to sip from a fire hose, where every small shift feels like a deluge. The change in tone from a friend or a slight shift in routine is overwhelming, and I struggle to keep my footing. If I could curate life more slowly, instead of drowning in it, I imagine the peace I’d feel. But that’s not my reality, and learning to live with that flood is something I have to teach my daughter—and myself.
I hope to at least give her the advantage of time. I did not realize what my troubles were until I was in my 40s. If I can teach her, as she learns to communicate better who she is, perhaps my role will mean something. If I can, along with her, develop ways to carve out one's niche, surround ourselves with compassionate people who understand and accept both the bad and the good, and accept ourselves while feeling worthy of keeping our boundaries safe, then perhaps it is something. It will never erase the decades of pain, but I can reforge that pain into her strength. I can show her how to open her heart to the unknown and feel safe through the chaos.
I still struggle, but I have compiled some ideas on how I can improve my anxiety when something is different or ambiguous. Here are some things that help:
Ideas to Help
- Surround yourself with people who will try to understand. You can't choose everyone, but one or two good people can make you feel validated.
- If the balance of structure and novelty is an issue, try creating a thematic schedule. For example, instead of saying “Read from 7:00–7:30," schedule the time as free time. Think of time blocks as categories, not for specific actions as much as possible.
- Balance preferred and non-preferred tasks to preserve your energy. For example, alternate between something that feels comforting and something more challenging.
- Set boundaries and don’t shame yourself for having needs. Everyone deserves their space to feel safe and comfortable.
- Remember that you are strong too. Very strong. Sometimes surviving the day is already a monumental achievement.
Courage is fear that has said its prayers.
– Anne Lamott