UNMASKED: Snippets & notes from a lifetime collection of journals  (pre-diagnosis).
Advocating for autistic acceptance.

 

 

 

June 15, 1994,

 

I am so silly and foolish at times! Sitting quietly on the couch, avoiding
eye contact with my father; running to the bathroom after an excruciating twenty minutes of holding my urine (& breath); hiding in a dark – unlit – bathroom, cramping over behind the bed; HIDING BEHIND A DOOR SUCKING IN MY BODY! No problem in any rectu[m] for me! Silly, I tell you.

 

Kalpita Pathak
Age 19

COMMENTARY:

Ah, the infamous avoidance of eye contact. And still not diagnosed until my forties … 👀

 

Interoception – one of our eight senses – helps us understand how we feel in our bodies. It helps us identify if our bladders are full, if we are thirsty, cold, hungry, etc. Many autistic people struggle with “reading” their interoception cues. In this entry, I knew I was uncomfortable but didn’t realize for twenty minutes that it was due to having to urinate. This still happens to me as an adult and I often set timers to remind me to drink liquids, use the bathroom, eat. Even breathe.

 

Many autistic people also have co-occurring conditions, such as Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia syndrome (POTS). Many of us have all three! Like autism itself, these can take years or decades to diagnose. GI symptoms are common to all three.

 

I refer to myself as “silly” and “foolish” because it had been ingrained in me that my discomfort and pain needed to be downplayed/ignored. They were nonexistent, attention-seeking, inconvenient. I learned early to make myself as small and invisible as possible. I know I am not alone in this. I am not invisible anymore.