Autism and Incontinence
I (40F) am autistic and also have several issues that make me incontinent. I have had pelvic floor dysfunction and overactive bladder since I was very young, and have always had mild stress Incontinence. I also have urological pain with urge and voiding. A couple years ago I started receiving Botox injections into my pelvic floor to help with the pain associated with my problems there and they help, but made my mild stress Incontinence go to moderate and I started wearing pads. This year I had a surgery and also was diagnosed with kidney disease, and now it is pretty severe. In order to treat the kidney disease I must drink far more than I used to, and the pain is constant even after voiding. Pain has been my primary signal to let me know that I need to go to the bathroom.
I also struggle quite a bit with transitions and interroception (recognizing body signals) which make things worse. I don't recognize that I need to go and so when I have an accident the volume tends to be quite large. I wear pullups and a booster and most of the time don't leak. When I am forced to have regular transitions where I have to get up throughout the day I will have much smaller accidents or actually make it to the bathroom without one. But, without that structure like classes or tasks throughout the day I fail to impose the transitions on myself. Check-in alarms get ignored and are extremely distressing, although I have some success with having my caregivers periodically prompt me.
All things considered I manage it okay. My partner is super supportive and nonjudgmental. I can change and clean up after myself. It can be frustrating that my body doesn't tell me that I need to go until it's going, and the need to drink so much more than I used to makes it so much worse. I don't think there is much more I can do about it, the oab med helped before the fluid intake increase and the transition structure is really hard for me or my caregivers to impose upon my day. Most days I don't leak and that's a win for me.